Caregivers Experience Disability, Too.

By Jason Green

Ever since the Americans With Disabilities Act was signed into law by George W.H. Bush on July 26, 1990, there have been improved conversations and awareness on disabilities. Although, there is perpetual struggle for the disabled community. This is the case for any historically oppressed group. At least the law enfranchised disabled citizens.

Now, there is a fight to keep to this right, but another conversation needs to be acknowledged in these trying times: caretakers can feel the agony of disability even without having one themselves.

For the purpose of addressing the struggles of caretakers, this is a conversation oriented for caretakers that can be deemed genuinely caring for their disabled dependents. Addressing higher rates of mistreatment and abuse towards disabled children at the hands of their caretakers is an entirely separate issue. 

1 in 5 children in the United States has special healthcare needs. [1]

A good caretaker is the backbone of their success; caretakers navigate the resources to help them, raising them to have robust self-esteem. However, finding these resources or understanding their child’s disability can be like going through a maze where it is prohibited to stop moving.

There are many variables to keep track of. Going to the doctor’s appointments, then, often finding specialists and working with schools can feel exhausting. What can be even more frustrating is that parents may not get the answers they are looking for, or they may be misguided.

Caregivers can not start to help their children if they can not understand what they are dealing with.

When disabilities are identified, caregivers can not catch a break as the bills roll in when services and surgeries are involved.

Cerebral palsy is one of the most common physical disabilities with 1 in 345 children having this kind of disability [2] 

The condition can have financial strain on families as it is not uncommon for surgeries to be used as a treatment option. 

For example, children with cerebral palsy commonly undergo orthopedic surgery depending on the severity. It is not unusual to see tendon lengthening for those with the condition. Although, some surgeries can be expensive even with health insurance. Some families may not have insurance. [3]

Lumbar spinal fusion can be used to fix the spine for cerebral palsied children with scoliosis, but the procedure can  cost around $100,000. [3]

These kinds of surgeries are not for convenience, but are necessary matters.

Not only do caregivers have to look for answers, they also have to find a way to handle their finances. It could be a decision of financial sustainability versus their children.

Even without being burdened with medical bills, caregivers face psychological stress.

In one study, families were shown to have an increased risk of divorce with children with Autism Spectrum Disorder (Autism Spectrum Disorder) due to higher needs of having the condition compared to non-disabled families. If caregivers were to handle the first couple of years together, the rate decreases, but worry for their children with ASD extends past childhood. [4] worry will always be at the forefront of every caregiver. 

Education can be a challenge for caregivers with disabled children as according to the National Education Association, “the majority of complaints of discrimination filed with ED [Department of Education] are about the denial of special education services. The ED works to resolve those complaints through voluntary compliance agreements, not lawsuits.” [5]. While there are laws in place to protect children with disabilities such as the Individuals with Disabilities Education Act, enforcing the laws is a tricky situation. 

If caregivers wanted to pursue private schools, it may be more challenging as these kinds of schools may not be capable of handling disabilities.

The education system can only do so much until caregivers have to fight for their children.

Sometimes fighting for one’s disabled children becomes too much, caregivers have several options which include group homes, long-term care facilities and several more. This is a reality for many caregivers.

Acknowledging the struggles of what caregivers go through can make the journey feel less harrowing because caregivers experience disability, too. 

Sources

[1] The Annie E. Casey Foundation. (2023, August 9). Children With Disabilities and Special Health Care Needs. The Annie E. Casey Foundation. https://www.aecf.org/blog/the-state-of-children-with-disabilities-and-special-health-care-needs

[2] hiehelpcenter.org. (2016). Cerebral Palsy Cost Guide | Budgeting and Finding Help. Hiehelpcenter.org. https://hiehelpcenter.org/cerebral-palsy-cost-guide/#surgeries-and-medical-procedures 

[3] Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G., & Bolt, D. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of family psychology : JFP : journal of the Division of Family Psychology of the American Psychological Association (Division 43), 24(4), 449–457. https://doi.org/10.1037/a0019847

[4] Long, C. (2019). Parents of Students with Disabilities: Don’t Gut Federal Funding | NEA. Nea.org. https://www.nea.org/nea-today/all-news-articles/parents-students-disabilities-dont-gut-federal-funding