Unemployed Parents of Disabled Children

Life takes a series of twists and turns for everyone. Even the most well planned future can change in an instant. This is particularly true for parents of very ill, or disabled, children. Those who are single struggle in this more than most.

The plight of unemployed parents of disabled children remains a silent one. Debates rage when considering health care and other benefits for illegal immigrants, yet scarcely is this situation mentioned. Why?

On December 21, 2006, President Bush signed into law The Lifespan Respite Care Act. Of course, without money, this law will never take effect. If funding is allocated, most likely the applicants will become entangled in governmental "red tape," just like with other bills. It is doubtful that all needy families will receive services, but I will keep an open mind until we see the statistics. I also wonder about the quality of services, but again, show me the numbers.

In the mean time, the fact remains that many parents are unable to work because they care for a child who is either very ill or disabled. Most of the public is under the false impression that health insurance pays for nursing care. This is not always the case. Even if nursing hours are granted (sometimes it is a fight to get them), they generally are not enough to enable a parent to work full-time, especially if they are single. Keep in mind, even caregivers need a break. They also tend to overlook their own health, which is not good for anyone. Finding the time to work, care for their children, and care for themselves is not always easy.

I wondered why no one is addressing this, so I called the National Family Caregivers Association to see if the organization would help the parents who wish to find employment. While they do a fantastic job of educating the public, they fall short in this area. I was referred to other organizations, none of which provided any help. I even asked workingmother.com for advice. They had none. Certainly, the technology exists to help these people, yet nobody is tapping into it.

I turned my focus to a local disability organization. Surely, they would have ideas to help these parents. Sadly, they did not. While my idea sparked the Director's interest, he later declined to investigate it further because he was too busy with another project. (They are in the middle of constructing a new building.) A family service worker from the local children's hospital told me that parents are constantly asking where they can find flexible employment. I wonder if Congress considered this as they debated The Lifespan Respite Care Act. I doubt it.

According to a Census 2000 special report, 21.8% of families raising a child with a disability are in poverty. Parents of disabled children are not always able to work the traditional hours, thus the main reason for their inability to hold down a job. While it is understandable that employers need a degree of consistency, a large number of stellar individuals with various talents remain out of work. Ironically, they would make some of the most loyal and hardworking employees. It is a catch 22.

What will fix this dilemma? Perhaps local (and national) organizations should consider stepping in to help. After all, parents have a great deal of experience in the disability, or illness, of their child. These organizations also receive millions of dollars in donations. I cannot imagine that they could not use the services of talented individuals with vast experience in the field.

Where are the companies that boast of being family friendly? Have they considered the financial benefits of contracting with these individuals? When applicable, they can save thousands of dollars in taxes and benefits. It is a win-win situation for both sides! So why don't we see more of this?
I find myself in disbelief that a country as great as the United States would overlook this population. In a society where we afford rights to those who obtain them illegally, why would we do any less for those who truly deserve them?