Weekly Briefing

Shining new light on our unacceptable treatment of persons with disabilities

There's a distressingly inconsistent attitude that modern Americans bear toward persons with disabilities. On the one hand, there's an air of smugness and complacency.

"Hey look at all the advancements we've made. We've passed laws and built ramps and handrails and changed our language. People with disabilities have become increasingly integrated into popular culture as athletes and actors and models. Even one of the nation's last great bastions of stinginess - the insurance industry - has begun to change some of its ways."       

A closer look at the reality that confronts tens of millions of our fellow citizens, however, reveals how superficial many of these changes are - especially if you happen to be a person of color, or of modest income.

Yes, it is true that we have made progress. Not all persons with disabilities are simply hidden away or warehoused as they were in the past. For disabled persons of means and education who possess a dedicated support network, there are more and better opportunities than there were before and an encouraging number of medical and technological advances.

Unfortunately, the reality for most persons with significant physical or mental challenges still remains incredibly daunting. For the most part, these people confront the fact that they will be less well-off, enjoy fewer opportunities and lead shorter lives than there less- or non-disabled fellow Americans.

Causes, effects

To a certain extent, of course, some differences in life quality are unavoidable. Even at their best, modern medicine and social science are not always capable of working miracles. Still, for a huge percentage of the nation's disabled, their diminished (often appalling) quality of life is directly attributable the failure of government to provide the kind of basic, social safety net services that simply ought to be guaranteed by a civilized society in the 21^st Century.   

In North Carolina, the most glaring recent example of this failure can be seen in the ongoing crisis in the state's system of serving persons with mental illness, developmental disabilities and substance abuse. Lured by the siren song of "privatization" (i.e. the ridiculous notion that profit and greed would somehow do a better job than decent pay and facilities of incentivizing people to care for and assist people in need) mostly well-meaning public officials have been dismantling a flawed, but fixable system and replacing it with something that can only be called a "system" in only the most generous sense of the word. The results, as Chris Fitzsimon continues to document on a regular basis, have been disastrous for a scandalous number of people. Here's one of the more shocking facts: In 2007, roughly 1,200 North Carolinians were discharged from mental hospitals into homeless shelters.

Disabled child = poverty

But, of course, the impact of society's failure to invest in public systems to sustain and lift up the disabled can be seen in places other than de-certified hospitals and homeless shelters. Two recent works of analysis highlight this fact.

The first comes from researchers in the School of Social Work at UNC Chapel Hill. According to a study headed up by Dr. Susan Parish and reported last month in an article entitled Material Hardship in U.S. Families Raising Children with Disabilities (as reported on the school's website):

"Families with disabled children are struggling to keep food on the table, a roof over their heads, and to pay for needed health and dental care."

Moreover, this problem is not confined to the poor. The abstract from the report puts it this way:

"The research indicated that families of children with disabilities experienced significantly greater hardship than did other families. As family income rose above the federal poverty level, hardship declined sharply for families of children without disabilities but not for families raising children with disabilities. (Emphasis supplied).  Thus, the U.S. federal poverty level was found to be a particularly poor predictor of hardship for families raising children with disabilities. Finally, among families of children with disabilities, single-mother and cohabiting partner families particularly were at risk for experiencing severe hardship."

Dr. Parish summarized her group's findings this way:

"The bottom line is that U.S. families raising children with disabilities are reporting severe hardships at rates that are chilling, including families that are solidly middle-class," she said. "We were shocked to find such high rates of hardship among upper-income families."

According to Parish, the study points out the need for a much more robust social safety net to support such families. Unless modern society wants to simply accept the fact that hardworking families to whom life has dealt a tough hand must lead lives of want and worry, we simply must do more.

Denying coverage to the deserving

A classic, practical example of how the current safety net frequently falls short in absurd ways is evidenced by another release that came out last month - this one from a group that seeks to reform federal Medicare laws.     

The issue in question is the mandatory two-year waiting period for Medicare health insurance that exists for severely disabled people. As we were reminded in a memo released last month by the Eastern North Carolina chapter of the National Multiple Sclerosis Society, current federal law requires people who become disabled with a chronic illness or disability to a endure a wait of 24 months (29 months actually, when all the bureaucracy is accounted for) in order to obtain Medicare health insurance. Some such individuals can qualify for the less generous benefits of Medicaid in the interim, but only if they first become impoverished.

The practical effects of this policy are often absurd. For instance, a person who develops MS or some other disabling condition and is forced to stop working can apply immediately to receive Social Security Disability Insurance (SSDI). Once found eligible, however, the person must wait five months to receive cash benefits and, then, an additional 24 months after that to obtain health insurance through Medicare. But, of course, such people need their health care immediately when they are no longer able to maintain employment. To make people wait two-plus years even though the government has already determined the person to be eligible is hard-hearted and bureaucratic nonsense of the highest order.

The practical negative impact of this archaic (36 year-old) policy is also significant for state governments. Because so much of the burden during the waiting period falls to state Medicaid programs (about 40% of the people end up on Medicaid during the wait) state budgets are severely and adversely impacted. In North Carolina, the state expends millions per year covering this group. Medicare, of course, is a wholly federal program. When this absurdity is added to the cost in poor health outcomes and diminished quality of life for the people who are forced to wait, (thousands die each year before they receive the Medicare benefits their work wages helped pay for) one really does begin to wonder about the sanity and morals of the penny-pinching of who would perpetuate such a system at the same time that they're enacting and sustaining huge tax cuts for the richest 1% of Americans.

Going forward

The process of dragging the American social safety net into the 21sty Century will not be easy.   Advocates at the MS society are attempting to muster support for a baby step in which the North Carolina General Assembly would pass a simple resolution calling on the federal government to eliminate the Medicare waiting period. Let's hope that it's just the start of a successful effort to re-imagine and rebuild the systems we use to do our duty toward our fellow humans. Maybe we'll even go so far as to enact policies that actually live up to our collective self-image.

 Email This Post  Print This Post

This entry was posted on Tuesday, September 16th, 2008 at 5:05 am and is filed under Weekly Briefing. You can follow any responses to this entry through the RSS 2.0 feed.