The "Community Living" Crisis for Individuals with Disabilities

The "Community Living" Crisis for Individuals with Disabilities
by Colleen Beard of CareSpotlight

Nationally, Developmental Centers are closing. ICF's (intermediate care facilities) are drastically downsizing or closing. Individuals of all ages living with intellectual, developmental and/or physical disabilities are being moved "into the community" - ultimately in an effort to carry out the Olmstead Ruling - from a residential care perspective. 

(On June 22, 1999, the United States Supreme Court held in Olmstead v. L.C. that unjustified segregation of persons with disabilities constitutes discrimination in violation of title II of the Americans with Disabilities Act. The Court held that public entities must provide community-based services to persons with disabilities when (1) such services are appropriate; (2) the affected persons do not oppose community-based treatment; and (3) community-based services can be reasonably accommodated, taking into account the resources available to the public entity and the needs of others who are receiving disability services from the entity.)

The problem is, the supports, regulations, oversight, and accountability have been drastically reduced in these smaller, community settings.  And, many of these homes are unlicensed. 

There will always be reason for ICF's to stay open. Not everyone can live in these smaller settings, "in the community". These smaller settings (i.e. a 3-bedroom home) typcially do not have nursing services, and for many reasons, "community living" is not an option for some.

However, high-functioning individuals should absolutely be in smaller, community settings - if this is what they/their families desire. And, hopefully their move will result in more opportunity, choice and ultimately happiness in their day-to-day lives.

There are also those that might not need nursing care every day, but are not considered to be "high-functioning" either. They might require 24/7 total care; however, the idea of more choice, activities and a smaller environment are appealling and advocates say they should be "integrated into the community". However, many facilities and larger group homes are actually already in communities - with neighbors. Yes, these facilities and larger homes are located all over the country in residential neighborhoods. And, living "in the community" - in smaller settings - does not always equal "better".

With more and more care providers/agencies seeing the business opportunties that have resulted from this "community living" movement, they are claiming to be able to care for these individuals. However, what we are seeing in too many cases is quite the opposite. 

So much so, that the Chicago Tribune recently published this three-part series spotlighting the severe neglect and abuse at the hands of multiple providers in Illinois. But, this is far from a "one-state issue". This is happening all over. Other news publications have published stories as well - ProPublica being one of them. You can find some of those stories on this site under "Scary Truth." 

So, ultimately, who is to blame? While the providers guilty of neglect, abuse, and even death, are undoubtedly to blame and should be held accountable; the finger must point to the very top. But, are the powers that be even paying attention? It seems the pendulum has swung too far and disability rights advocates need to be thinking about the health and safety before anything else. 

While getting out in the community more and having more choice in daily living activities is ideal, what do these choices matter if a provider can't meet that individual's basic care needs?

Health and safety must be paramount.

At the national, state and local levels, there must be regulations, oversight and accountibility in order to protect and care for some of our most vulnerable citizens of all ages - especially those unable to self advocate.

​The following are a series of articles that the Chicago Tribune has recently published (in order of most recent) exposing the quality of care, or lack thereof, for individuals with developmental disabilities living in various care settings in Illinois.
Part One:
Suffering in Secret: Illinois hides abuse and neglect of adults with disabilities
​By Michael J. Berens and Patricia Callahan
Chicago Tribune, November 21, 2016

(excerpt)
"...A male group home resident, accused of stealing cookies, was beaten to death by his caregiver. Employees at one home bound a woman’s hands and ankles with duct tape, covered her head with a blanket and left her for several hours on the kitchen floor. For their own amusement, employees at another home repeatedly ridiculed residents to provoke outbursts, a game the caregivers called “breaking them".

And, all too often, vulnerable residents’ health and safety has been left to unlicensed, scantly trained employees. Front-line caregivers failed to promptly call 911, perform CPR or respond to medical emergencies that resulted in death. In hundreds of cases, the department allowed employees of group homes to investigate allegations of neglect and mental abuse in their own workplaces, the Tribune discovered. That alliance between group homes and Human Services’ investigative arm, the Office of the Inspector General, is not specifically disclosed in state investigative reports.

Citing patient privacy laws, state officials maintain that the addresses of the more than 3,000 state-licensed group homes are secret. Illinois officials refuse to disclose the enforcement history of any home, even in cases of fatal abuse and neglect.

Part Two:
SUFFERING IN SECRET:Flawed investigations ignore victims of neglect
By Michael J. Berens and Patricia Callahan
Chicago Tribune, November 21, 2016

Part Three:
A TROUBLED TRANSITION In the rush to close institutions, Illinois ignored serious problems in group homes
By Michael J. Berens and Patricia Callahan
Chicago Tribune, December 30, 2016

Continued Coverage:
Man missing from group home found wandering Chicago streets
By Patricia Callahan and Peter Matuszak
Chicago Tribune, December 23, 2016

(excerpt)
"Three people remain missing from the network of homes, and attorneys for the Illinois Department of Human Services leveled additional allegations that Disability Services of Illinois CEO Reuben Goodwin Sr. was obstructing the search."
​