This post is dedicated to the hotly-debated, nationwide movement that is taking place: to close down sheltered workshops for adults with intellectual/developmental disabilities. This action will drastically alter lives. Yes, some lives will improve from this change. But, this is certainly not an answer for all.
Approximately 230,000 individuals with intellectual/developmental disabilities work at sheltered workshops in America, and these workshops - as we know them today - are slated to close by 2020.
Disability rights advocates want to close these sheltered workshops and move individuals into the working world - into "the community". They claim these sheltered workshops isolate people with disabilities and exploit them by not paying at least a minimum wage.
For those individuals that are able to work for a business with little supervision, be productive, meet goals, and be reliable - without a doubt, they should have that working opportunity in the community and be fairly compensated. However, for many people with intellectual/developmental disabilities, this is not their reality (including my brother, but I will address that later).
I believe that businesses should be encouraged to hire individuals with intellectual/developmental disabilities, and that resources at both state and county levels should be offered in this process. Not only to help people to find appropriate employment, but to ensure the environment is productive, supportive and safe. And that the environment remains this way.
Individuals with disabilities need more employment opportunities. But, working in the community is not a solution for all, and it's not practical for all companies.
Certainly, not everyone is capable of being "in the community" independently and holding down a job. It is simply not an option. And for many, it never will be. Not only is it not possible for many, but it is also not safe.
These sheltered workshops are much more than simply "a place to work". For many, this a place to go when there is no other. A safe place that will offer a sense of accomplishment, independence, pride, and companionship/friendship.
Staff is trained to work with individuals with intellectual/developmental disabilities.
And let's be very clear: these individuals are already doing work for companies. They are helping to run printing presses, sorting hangers, inserting golf tees in boxes, shredding paper, assembling pizza boxes, crushing cans, and so much more. These workshops get contracts with companies in their communities that want to support people with disabilities.
Yes, it is true: these companies are able to cut costs by not having to pay these workshops the same amount they would have to pay if they were employing these individuals. But, that is a complex issue and is addressed by several parents in the videos I have added to this site (link below) from organizations like Dignity Has a Voice.
Many families would tell you they would actually be willing to pay the workshops to keep them open and have a place for their loved one to go each day. If you don't have a loved one at a sheltered workshop, that might be difficult to understand. But, it's important to keep in mind there are very different situations and people with various levels of ability at these workshops.
Workers are usually not relying on this money to pay their rent or to eat. The majority of these individuals are already receiving federal/state/county funding to live. Their workshop paycheck is typically discretionary income and often is next to nothing.
I would argue that this could be changed - the business model and the level of compensation for those that are producing and that want to stay at the workshops.
But, to close these altogether seems cruel.
So, what will happen to those individuals that aren't able to hold a job in the community? Will they be forced to go to a day program where there is no longer any work to be done? (And, the day programs are an entirely different post-worthy discussion. Not all programs are created equal.) Will they spend their days at home? What will they do all day? Who will care for them? What about those individuals that are still living at home with their parents? Do these parents quit their jobs to be home all day with their adult child who once loved to go to work so much?
And, to the proponents of these closings that say some workshops will remain open - it is a slap in the face to many of the individuals working at these workshops and their parents/families. The few workshops that will remain open will no longer be workshops, they will become "activity centers" and will be sold to private enterprises that will not pay the same salaries of current workshop employees. Therefore, individuals that do enjoy the sense of pride and accomplishment from work (and the income, be it small) but are unable to work in the community, will lose the opportunity to work. And, current employees of workshops will be forced to leave due to pay and the quality of care will undoubtedly decline. This privatization also means less accountability and less transparency.
My brother, Patrick, is not able to hold a job in the community. He requires 24/7 total care and lives with severe physical and developmental disabilities from Cerebral Palsy. He needs someone with him at all times, he is very limited in his abilities and he would not be able to meet any productivity guidelines set by any company in the '"real world." This is his reality. To place him in a "community" working situation would be naive and cruel.
As his sister and legal guardian, I have his best interest in mind. In fact, after over 20 years of attending a sheltered workshop, I moved him to an activity-based day center because he was no longer benefiting from work and much preferred to listen to his radio, wheel himself around, visit with people, and occasionally attend social outings. He was not interested in work and it was not bringing him joy or a sense of accomplishment. Activity/day centers is what makes most sense. And, that's OK.
I am not taking away his rights to a job in the community. I am protecting him from a situation that might result in being unsafe, upsetting, confusing, and more frustrating than productive.
However, for so many people, the workshops are vital to their well-being. And they are able to contribute to society in a meaningful, safe and supportive environment these workshops provide. They don't want to leave and so many of these sites are wonderful.
Again, for individuals that are able to hold a job in the community - with or without some level of supervision/help - by all means, YES! And, they should be able to make at least a minimum wage.
But, there should be a choice. Choice for all individuals. Choice for families that advocate for their loved one that is not able to self advocate. Choice is what should be protected, not pushing a righteous, one-size-fits-all public policy agenda. We need to meet people where they are and celebrate our differences.
We have a webpage on this topic with more information and videos.
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.
Suffering in Secret: Illinois hides abuse and neglect of adults with disabilities
By Michael J. Berens and Patricia Callahan
Chicago Tribune, November 21, 2016
"...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.
SUFFERING IN SECRET:Flawed investigations ignore victims of neglect
By Michael J. Berens and Patricia Callahan
Chicago Tribune, November 21, 2016
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
Man missing from group home found wandering Chicago streets
By Patricia Callahan and Peter Matuszak
Chicago Tribune, December 23, 2016
"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."
My name is Colleen Beard and I am the founder of CareSpotlight.com -CareSpotlight is a startup company working on launching a national directory of care and service providers for seniors and individuals of all ages living with disabilities, illness and serious injuries. Users will be able to post and read reviews, connect with others and access additional resources and information. We also offer local patient advocacy services in Northeast Ohio.