OPED: A course in disability economics
Caretakers for the disabled face many challenges. There are extensive demands on their time, which in turn tends to isolate them from friends and even family. It also isolates them in the workplace which has tremendous impact upon their careers over time.
Caretakers also face an array of fiscal challenges, both seen and unseen. These include many types of work limitations. Scheduling work with school for special needs children is a major challenge. My wife and I broke the rules for several years where both of us worked full time. How we managed this is unknown with an increasing number of days off and early dismissals from school.
Even working as a professor was difficult due to my children’s constantly changing bus schedules. Simply setting my office hours was a problem one semester. Those on the clock have considerably less flexibility and I can only imagine the troubles they must have.
Meetings that occur after regular work hours are hard to attend. And meetings are important, both in the formal sense as well as the informal personal connections they afford one. Those who don’t attend meetings get left behind in one way or another.
Fatigue and lack of sleep is an issue many caretakers face. Getting up in the night to change diapers, dressings or give medicines is common. Our son Frank is adorable in every way but cannot communicate, feed himself, etc. One of his few negative habits is getting up at night for several hours. When we were both working he would do it about 3 times per week. I got little sleep for several years.
Utility costs can be great as those with mental handicaps leave water running, refrigerators and freezers open, etc.I joke that our daughter is a “Wasteasaurus” as she has lights on, music and TVs playing when she’s not present. She’s also known as “The Laundry Maker” as she tries on clothes, throws them in the hamper or on the floor.
Additional economic challenges are many and varied. If you know any caretakers, it would be enlightening to speak with them; and all the more important as the “hidden minority” of disabled folks grows steadily within our society. Our family has had varied and sundry fiscal woes associated with disability. In one instance I was shopping with my son and found an item I wanted at half price. My boy took off and by the time I located him and returned, the item was bought. Had he been able to communicate, this would not have occurred.
A small bump on the economic road, but there’s lots of bumps.
Life insurance is difficult to obtain for the disabled. While they may not need as much coverage as a primary breadwinner; there should be coverage for final expenses. A funeral can bankrupt a family.
Setting up trusts is necessary but complicated for all unaffordable for most. Caretakers are often caught up in treading economic water; maintaining but not progressing. And not having solid future plans for care or their own retirement.
On the positive side of the economic equation, there is an extensive amount of assistance available from government and nonprofits. We could not survive without the help of nonprofits. Nonprofits work with our children, take them swimming, etc. Our kids go to a summer camp for mentally handicapped children.
Government assistance is extensive; large diapers for our son would be a significant expense were they not supplied to us. The reality, however, is that government assistance will constrict due to budget cuts. Conservative control over the federal and many state governments will accelerate public cutbacks.
Learning about this and getting through the red tape is a challenge .It is a major hurdle for the less educated. While we have some great people in our corner, we have experienced significant challenges with public agencies when the agency is dysfunctional.
A major economic plus is that vacations are “unauthorized." Many if not most caretakers cannot go camping, to the beach, on a cruise, etc.The money saved is substantial over time. If one invests in tax-free IRA’s, 401(k) plans or the like it grows quite nicely.
The disabled and their caretakers don’t want sympathy; we all know what words “sympathy” falls between in the dictionary! But we need some understanding and just plain common courtesy. Denial of disability issues is quite pervasive. Unfortunately this keeps the disabled and their caretakers unseen and unheard. Denial makes them the “hidden minority." As such they are extremely vulnerable to all manner of mistreatment. Economic pressures are but a part of the mix.
Chris Hertig, Spring Garden, has two disabled children and worked with the disabled during college. He is a member of the Community Advisory Board for the York Dispatch.