Now planning for C. several hours beyond tomorrow is my version of "forward thinking". So tackling problems we'll confront several years ahead is simply not doable. Every day is a debilitating challenge.
That's not to mention the bleakness of C.'s future. I shudder to think what awaits her when I can no longer manage to care for her. Why would I choose to contemplate it before necessary? (Silently and secretly, I pray that she will not outlive me.)
As I've mentioned, our government offers limited and abhorrent living arrangements to individuals like C. They can look forward to a bed in our chain of remotely-situated and gargantuan institutions. There are no other options. Community-based group homes are few and authorities reserve them for the higher functioning disabled.
I am sure many of you face a similarly dismal dilemma.
Below is a close-up portrait of one person's long overdue transfer from the huge, cold institution where he spent most of his life, to a warm, small group home.
It took the threat of legal action by the U.S. Justice Department [see NY Times "After Decades in Institutions, a Bumpy Journey to a New Life" September 29, 2012] to make this happen for him and many others like him. When will we all be blessed with that sort of tough governmental intervention?
But lest we delude ourselves into believing that all community-based homes are exemplary, here are some appalling revelations from a 2011 New York Times expose ["ABUSED AND USED: At State-Run Homes, Abuse and Impunity"] by Danny Hakim.
"Nearly 40 years after New York emptied its scandal-ridden warehouses for the developmentally disabled, the far-flung network of small group homes that replaced them operates with scant oversight and few consequences for employees who abuse the vulnerable population.Here is just one of the horrific stories of abuse and impunity related in the article.
A New York Times investigation over the past year has found widespread problems in the more than 2,000 state-run homes. In hundreds of cases reviewed by The Times, employees who sexually abused, beat or taunted residents were rarely fired, even after repeated offenses, and in many cases, were simply transferred to other group homes run by the state...
...The Times reviewed 399 disciplinary cases involving 233 state workers who were accused of one of seven serious offenses, including physical abuse and neglect, since 2008. In each of the cases examined, the agency had substantiated the charges, and the worker had been previously disciplined at least once.
In 25 percent of the cases involving physical, sexual or psychological abuse, the state employees were transferred to other homes.
The state initiated termination proceedings in 129 of the cases reviewed but succeeded in just 30 of them, in large part because the workers’ union, the Civil Service Employees Association, aggressively resisted firings in almost every case. A few employees resigned, even though the state sought only suspensions...
...The Civil Service Employees Association, one of the most powerful unions in Albany, makes no apologies for its vigorous defense of the group-home workers it represents.
But the union’s approach — contesting just about every charge leveled at a worker — has contributed to a system in which firings of even the most abusive employees are rare.
"Kenyetta Williams, an employee at a group home on Long Island, left a resident “soiled with feces and urine and suffering from a broken leg” on her bedroom floor for more than an hour, the records stated. Ms. Williams was suspended. In a brief interview last week, she said she was taking care of too many residents and covering for an absent co-worker at the time.Well, we never doubted that our children belong to the most vulnerable sector: veritable sitting ducks. But were you aware that even when their abusers have been apprehended justice is rarely done?
It was her 13th disciplinary write-up since 1994. Another employee, in the Finger Lakes region, was fined $375 after allowing a person in her care to sit in a van in her own feces for five and a half hours."
"One obstacle complicates any effort to take action against employees accused of abusing those in their care: The victims often cannot talk or have extreme cognitive impairment. Local law enforcement officials point to this to explain a lack of prosecution of cases."Let's keep fighting the good fight together for our silent children.