What do educators need to understand about families of children with disabilities?
Page 4: Stressors of Daily Living
In addition to coping with emotional issues and additional roles, the families of children with disabilities may experience significant stressors related to daily life. Although these stressors may sometimes interfere with families’ ability to participate in school-related events and activities, teachers should take care not to assume that these families are not interested in or supportive of their child’s education. Let’s examine a few of the more common challenges these parents experience.
Families who have children with disabilities may need assistance in areas such as emotional support, financial assistance, respite care, childcare for children with and without disabilities, and transportation. Despite these needs, many report that they receive little support from their extended families due to a lack of understanding, limited availability, and numerous other factors.
respite care
Temporary care of an individual with a disability that offers a break for the parent or primary caregiver.
Now listen as Luz Hernandez talks about the people whom she considers her support system, primarily friends and service providers (time: 0:57).
Luz A. Hernandez
Parent of a young adult with a disability
Executive Director, Hispanos Unidos Para
Niños Excepcionales (HUNE)
Transcript: Luz A. Hernandez
My family, like my sisters and brothers, they’re all support, but I think more than anything I think it’s more friends. People that really get to know me and my son and my family, they serve more as a support group. Andy’s nurse—because Andy has a nurse at home. He has one nurse, which is absolutely wonderful and would give the world for him—she’s helped us out a lot. And friends, just close friends. Family is good, but I think it’s a lot more difficult for the family to wrap their head around all of our issues or the issues of having a child with disabilities. I think they don’t see how it really affects you and how it’s different. So I would really say more friends, and families, or people who are in the disabilities field already that know how difficult it is, and they are more prone to help out and really kind of be there when you need somebody.
In general, the costs associated with raising a child with a disability are much greater than those of raising a child without one. These might include tutoring, accommodations like wheelchair ramps, assistive technology, or private therapies (e.g., speech therapy, occupational therapy, counseling). 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 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 accompany a child to medical appointments).
Access to health insurance and navigating the healthcare system are also significant stressors for many families of children with disabilities. As do all families, they often face unanticipated changes to healthcare benefits, co-payment requirements, or deductibles, all of which contribute to continued stress and hardship. Moreover, some experience difficulty obtaining insurance or face high premiums due to the number of healthcare services required by the child. Others who have insurance through an employer are hesitant to change jobs or careers in fear of losing their coverage. In extreme cases, such healthcare costs might even cause some to file for bankruptcy.
The families of children with disabilities often experience challenges, or barriers, related to accessibility—that is, the ability to independently access a device, service, or environment. The table below describes some common accessibility barriers that families may experience or need to address.
| Accessibility Barrier | Description |
|---|---|
| Perception | The belief or perception that individuals with disabilities enjoy a lower quality of life than do those without disabilities. |
| Policy | Any of a wide variety of procedures, protocols, or policies that deny reasonable accommodations to qualified individuals with disabilities, thus preventing them from participating in programs or benefiting from services. |
| Physical | Structural obstacles that prevent or impede the mobility of an individual with a disability (e.g., stairs, curbs). |
| Communication | Information that is presented in a way that inhibits an individual with a disability from accessing it (e.g., due to difficulty hearing, speaking, reading, writing, or understanding the information). |
| Transportation | The inability to access reliable transportation due to physical obstacles (e.g., the lack of a power lift) or inconvenient location or schedules of public transportation. |
The accessibility issues encountered by families vary according to the needs of their child. For example, the families of children with physical disabilities or multiple disabilities may have accessibility issues related to:
- Housing — Families may have to move, renovate their existing house, or build a new house that includes accessibility features (e.g., ramps, wider door frames). In the event that 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, or carrying their child).
- Transportation — Families may have to refit their vehicles or purchase new ones equipped with power lifts. Those who rely on public transportation may experience issues related to accessibility, scheduling, or routing. A lack of reliable, affordable, and accessible transportation options may limit the opportunities for children and youth with disabilities, for example by restricting their ability to take part in recreational activities.
For Your Information
Some families of children with disabilities may also experience stressors and barriers related to cultural, socio-economic, and linguistic diversity. To gain a better understanding of these stressors and barriers—and to learn some steps to help address them—view the following resources.
How to Break Down Communication Barriers Between Teachers and Families
English Language Learners in Special Education: 4 Things to Know About Partnering With Families
Supporting Families
The families of children with disabilities may experience significant stressors related to meeting everyday living needs, which can often be vast and difficult to manage. Although education is important to these families, at times their day-to-day needs may take precedence over everything else. Educators can provide support by:
- Listening to families and acknowledging their stressors
- Understanding each family’s individual circumstances
- Making available a list of community resources
For Your Information
Looking for further resources and information about supporting the families of students with disabilities? These organizations are a great place to start.
The Center for Parent Information and Resources (CPIR) offers an entire library of online resources developed specifically for parents on topics such as IDEA, early intervention, and much more.
The PACER Center serves families, youth with disabilities, and professionals. They offer trainings as well as information on disability-related topics such as transition and employment, mental health and emotional disorders, and family engagement, just to mention a few.
