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."
California Joins Handful of States in Approval of Security Cameras in Resident Rooms by Colleen Beard
On Friday, the California Department of Social Services approved in-room security cameras for residents in assisted living and other residential care facilities. (It is my understanding that this does not apply to all long-term residential care facilities.) California is not the first state to approve these cameras - not to be mistaken with the "nanny", or now what some are referring to as the "grannycams".
I spoke at length to Joe Balbas, c0-owner of Vista Gardens in CA and advocate for this issue, yesterday. When I initially watched this news video and read the article, I had many questions. He answered all of them, and I want to share with you what I learned from our conversation.
1. Vista Gardens is a memory care assisted living facility. This means that many residents have Alzheimer's Disease or dementia and might be vulnerable and unable to report abuse or neglect (should it ever unfortunately occur).
2. Mr. Balbas said these cameras allow families to request video footage - should they ever suspect something is wrong (i.e. discover a bruise on their loved one that cannot be explained, or if their loved one is unusually withdrawn, depressed or agitated).
3. Cameras in rooms do not have to be turned on. All residents/families have the OPTION, and in order for the camera to be turned on, the resident/family has to authorize this. If the resident is unable to advocate for themselves, then the family will make the decision for them.
4. Cameras can be turned off with 72-hour notice,
5. Cameras are motion-activated.
6. No one is "sitting around watching the camera footage" because there is no TV screen with live video to be watched by staff. These cameras are not the "nannycams" (or "grannycams" as some are calling them) that enable people to watch constant video.
7. Video footage is recorded and stored on a hard drive - it has to be pulled to be watched. It does not live online or in a cloud.
8. In Vista Gardens case, three people (management only) have access to the video recordings.
Opponents to cameras in residents' rooms say: this will discourage people from wanting to work at these facilities; these facilities are opening themselves to law suits; and that its a violation of resident privacy. Mr. Balbas thinks that facilities and others in the long-term care industry that are against the cameras have something to hide.
What I do know is that: abuse is occurring nationwide in long-term care facilities. It's a reality that no one can argue. And families might suspect something, but without proof, it can be very challenging to prove anything. While abuse can occur in the common areas of facilities, human behavior dictates that it is much more likely to occur when someone believes they are not being watched and/or while performing duties that require extra effort and patience ( i.e. personal care).
More states are looking into allowing cameras, and I believe it will be the norm of long-term care in this country eventually. Families are demanding more accountability of care providers and assurance that their loved one is safe. Of course these cameras cannot protect a resident in those terrible moments, should abuse occur. But they certainly can ensure that abusive employees are not able to hurt others in the future - if caught on tape.
This is a hotly-debated issue, and I am curious to know what you think. I do find it interesting that all the families at Vista Gardens have agreed to the cameras.
I have included the article below for you to read that accompanied the news video.
Updated at 3:43 PM PDT on Wednesday, Aug 12, 2015
From police officer body cameras to nanny cams, we are seeing cameras used more and more as a way to help provide accountability.
Now they're an option in patient rooms at senior care homes.
Joe Balbas is co-owner of Vista Gardens, a local facility for Alzheimer's disease and dementia patients. He's been pushing for cameras, saying elderly patients in assisted living facilities should have the option of having security cameras in their room.
“This was based on safety,” he said.
Previously under California law, cameras were only used to monitor residents in common areas such as hallways or dining facilities. But on Friday, the department issued new guidelines allowing in-room cameras as long as the patient and their families agree to it.
Click here to see the new guidelines.
“What they (the Department of Social Services) have done for these families in California is unbelievable,” Balbas said. “They have provided another layer of protection for the loved ones.”
Balbas has been trying to get in-room cameras approved by the Department of Social Services for nearly five years. Click here to watch NBC 7 Investigates' original story.
The process took time because, as a spokesperson for the Department previously told NBC 7 Investigates, there were privacy concerns.
Now, before in-room cameras can be used, each family has to sign a waiver, which then has to be approved by the state's Community Care Licensing Division.
“We've been assured they are going to process these as soon as they can,” said Balbas. His facility is currently home to 60 patients, and each one of their families have already agreed to turning the cameras on, he said. Once the paperwork is approved, he said he hopes to get the cameras up and running in just a few weeks.
I took this picture last night at the long-term care facility where my mother resides. It was a bad night for me, for staff, and especially for the residents. This woman is unable to lift her head - she is NOT sleeping. She is unable to eat on her own and no one fed her because the one direct care employee that was working was only able to serve people their food. She could not also stop and feed one individual at a time. The staff needed, and the resident needed, HELP. She should be in a chair that tilts back, or maybe even on a feeding tube. But, to sit in her wheelchair like this - I just could not even make sense of it. She didn't eat.
This resident also uses an oxygen tank, and upon my arrival yesterday, I found her in distress because it was not plugged in - she was in significant distress. No one was around to help her. The nurse on shift was wonderful, and so was the one direct care employee. However, they were trying to help 17 residents. So, of course, there is going to be neglect (and in this case, this neglect is not the fault of these direct care employees, but instead the administration).
If these residents were all ambulatory and could help themselves, that might be another story. However, 17 people - most requiring significant, and some even total, care, there is simply NO way to provide even adequate care - forget "quality care"!
This has been happening regularly at my mom's facility since this new company took over in February - mainly in the evenings and on the weekends - when the management is nowhere to be found. Prior, the nonprofit organization running the facility was wonderful.
The following is an excerpt from Ohio Administrative Code, Chapter 3701-17 Nursing Homes:
"Each nursing home shall have sufficient direct care staff on each shift to meet the needs of the residents in an appropriate and timely manner and have the following individuals provide a minimum daily average of two and one-half hours of direct care and services per resident per day as follows..."
This facility is not meeting the needs of its residents, and forget in any "timely manner". It is quite simple as to why: they do not have enough staff scheduled. And when employees call off, they are not ensuring that there is adequate back up.
I decided this morning (after not sleeping last night) to start this blog for many reasons, but mainly because I cannot get this woman off my mind. She represents everyone that is unable to advocate for themselves.
Enough is enough. I know these things are happening everywhere and every...single...day. This is of course a substantial reason why I launched CareSpotlight.
While I continue to raise money to build the comprehensive care and service directory with review capability, I have decided that I will begin posting users' reviews and care stories on CareSpotlight,com. It might not be in the "perfect" format for now, but at least we can begin to share your feedback with others.
Please, submit your review today or share your story by clicking on the buttons below.
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.