The JJs List Blog

Group Homes Versus Institutions In Illinois

Posted by on February 7, 2014 - 8 Comments

Wheelchair

The state of Illinois has long been behind in serving people with disabilities. A recent article by Karen Meyers titled “Illinois Family Choosing Group Homes Over Institutions” highlights the complex issues of transitioning adults with disabilities from institutions to group homes.

Four years ago Illinois had one of the highest rates of institutionalization of people with disabilities, but recently things have changed.  The article states “Governor Quinn signed the Rebalancing Initiative Act, moving people with developmental disabilities into community-based settings.” Meyers shows that the transition is not always easy for the families of people of disabilities by telling the story of Lovey’s experience moving from an institution into a group home.

As a person with disabilities I have mixed feelings.  My family and I have never had to deal with the issues of institution or group homes. However, I have received a variety of disability support services throughout my life.  I agree that Illinois should encourage community-based living options for individuals who want that choice. I believe that we never know what a person can achieve until they are given the opportunity to try.  Often people make assumptions about what individuals with disabilities can and can not accomplish without giving them the opportunity to show what they are capable of.

People with disabilities can be similar, but they are not the same.  I have a disability but there is not a manual that says what I can and cannot do.  For example, I didn’t know or think I could go to college because of my disabilities, and neither did my parents.  For me finding what work best was a lot of trail and error.

That being said, I totally understand where Lovey’s mom was coming from, because her daughter was safe and well looked after in the institution where she spent over 20 years. Even after the mother died, Lovey’s sisters did not know whether a group home would be right choice for her. I think, like Lovey’s family, you have to be open to new possibilities and also hitting road bumps in order to figure out what is right for you.

In my opinion Governor Quinn encouraging community based living is a good thing because it gives people options and freedom of choice.  However, I think for some individuals and their family institutions are the best option. I think nobody knows the perfect answer, because everyone is different.

What are you thoughts and experiences?

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About the Author:

Sarah Armour is the Business Assistant at jjslist.com.  She enjoys managing the website, bookkeeping, coordinating the Disability-Awareness Trainings and organizing the Hop on the Bus to Independence Program. She graduated from Loras College in Dubuque, IA, in 2008 with a BA in Sociology. You can find her on Facebook and Twitter.

8 Comments

JJ says:
Feb 12, 2014

Beautifully put, Sarah! Thank you so very much for looking at the issue in different ways.

Ben Orris says:
Feb 13, 2014

I must say I agree Sarah that this is stated well but it is also incredibly inaccurate when you get to the point of Institutions being the best choice for some families. The term of Institutionalization revolves around disabilities, specifically Mental Health disabilities. Documented problems that Individuals with Mental Health challenges have faced while being institutionalized include being in poor living conditions, state hospitals that are understaffed and underfunded, as well as human-rights violations amongst other things. This option also meant a permanent decision where the individual would never be able to transition to the point of Independent living. I must say as an Professional Educator and a person who has Studied Human Development in College and having dealt with a form of Mental Illness all my life, Institutionalization is never the best option for anyone and should be left as a last resort if even considered. Institutionalization should not even be explored provided the individual still has a good amount of Plasticity in their brain. If this were an expectable option I would never have been able to even approach where I am today having progressed past countless suicide attempts that started at a very early age, past many hospitalizations and being in therapeutic school all the way up till I went to college at Oakton Community College, to Graduating from OCC with a Certificate including Honor’s accreditation, Getting employed by the Public School System where I work now, and achieving the Financial piece of independence as well. I must say there is nowhere near enough knowledge from the public on the subject of Mental Health issues and the fact that you or JJ would be swayed in any way that it ever be best for anyone to use the option of an institution is further proof that even the two of you do not possess the amount of awareness needed. If anyone wants to check the things I said http://www.uniteforsight.org/mental-health/module2
I hope we as a society can move past the times of old where we accepted being uneducated and end up using such inhumane options such as Institutionalization!

Rita Winkeler says:
Feb 14, 2014

I assume Ben Orris thinks all colleges should be closed.Colleges are INSTITUTIONS, just as the SODC where my son lives is an institution.That is just a name.What my son’s home,Murray Center is ….is a HOME! He is safe, loved, and cared for by professionals who have been well trained.I also am a guardian for my brother who lives in a CILA. His needs are TOTALLY different than my sons. I too am a professional with may degrees, and letters behind my name. I am also smart enough, and knowledgeable about the disabled to know “one size does not fit all.” Illinois talks a good talk about community placement but is NOT willing to put their money where their mouth is. Is my son REALLY going to have a nurse in his CILA 24 hours a day as he needs. Of course, not. Will he be cared for by people making a living wage, not $8.25 an hour, but MOST OF ALL….will his CILA be held to the same standards as the SODC is….absolutely not. The SODC he lives in is monitored by 5 different agencies each year. My brother’s CILA is inspected only every 3 years, and then by an agency run by DHS, that is trying to close the SODCs. When the inspections, and staff are of the same quality as what is in the SODCs then we will speak of “community placement”. I have often pondered why the state values those living in the “community” less than they do those in the SODCs. If they really cared their expectations would be the same. Also, my brother in the CILA has much less interaction with the community than my son at Murray. Murray is part of Centralia…the people who live there go to the local churches, shop at the stores, everyone in town knows them, and yes, they can decorate their room as they like, etc. etc. Please, no matter what “professionals” say…even myself….the best people to make these decisions are the residents parents/guardians….not professionals who have never met my son.

Ben Orris says:
Feb 16, 2014

I am sorry to find you so bitter Rita, but if you are truly a Professional Educator you should be able to move past your disappointment of status’s held by family members and look at things Objectively. If one reads my comment coherently, no part of it includes me trying to say all colleges be closed as they are Educational institutions and in no way the same as mental health institutions! I understand completely there is not one size that fits all when considering disabilities, I am a real Teacher remember. If you want to make a valid debate please include some data to support your statements just as I did. One more requirement you should fill before you can start a debate is You try going through just a week of your life subjected to the challenges one with a mental illness will face. Everything from the stigma applied to us and the emotions we deal with as well. At weeks end consider how by the end of that week you have become a champion in life just due to what you accomplished that week and just the fact that you survived the week without hurting yourself or others in any way because you managed emotions successfully. Now consider the ultimate goal you had the whole time to get to a point where you are a healthy productive independent member of society and the community at large. Imagine that possible goal being taken away no matter how long you choose to continue to work with this struggle or how much progress you make, this possibly just because a choice was made by your guardian and you had no say in the matter. I agree the state has been terrible at addressing the needs for the mental health community, but the proper thing to do with this is speak out to government officials voicing your opinion on this in objective fashion just as I do. I am sure you are aware that if a person is one of the brilliant few when they bring up an issue or situation the majority of society has not intellectually caught up yet so it may not become the new practice receiving emphasis yet. Still it remains true that Institutionalization may be unavoidable at some point but it should remain a last resort.

Jake says:
Feb 17, 2014

Ben, thanks for this link. I had previously heard some of this stuff but a lot was new to me. I, too, have never been institutionalized. I agree totally that the state’s priorities are messed up and something needs to be done about it. I realize that what I’m about to say probably won’t sit well with a lot of people, but I think perhaps the voting process–and maybe the legislative process–needs to be changed somehow. I don’t have all the answers, but it just seems like this issue keeps coming up and very little if anything at all has been done about it. I don’t want to get into politics on here in part because my take on the subject is somewhat skewed.

Ben Orris says:
Feb 17, 2014

No Jake, Thank You ! Thank You for being one of the rare few beyond me to possess the courage to even make a statement like the one you did on a public blog where you at least show that you do not blindly accept statements and question the ever-failing credibility of our U.S. Government. I tell you Jake your take is not skewed in any way and you echo the sentiments of individuals who possess brilliance so superior to the common sense held by most of society that those sentiments will for a while be viewed as not possible and will not start to be explored or accepted by most for quite some time. Yes You are right the voting process and the legislative process needs to be changed if not at least looked at. Part of the issue one way or the other is the way in which U.S. politics and perception work as a whole. I think you have heard me mention before that it is not possible to be in the field of politics and completely avoid getting your hands dirty or in some way make thousands if not millions of statements that are dishonest. In addition there is an ever-growing list of evidence proving complete corruption in this country at every level. Yet we as a society have always bragged about how great, free, and brave this country is. Not only has the reality of this never truly matched the amount of hype we provide it but now with where we are at in history of this country, One must always be concerned that voicing displeasure to the slightest extent will wind up being misconstrued as a hatred for the country or a possibility that it means you could have harmful intentions toward the country. Basically it is my opinion for this to get significantly better, there needs to be a change in U.S. Society as a whole !

connor magnuson says:
Feb 25, 2014

No Ben THANK YOU! Thanks for having the courage and clarity of thought i often struggle to achieve and posting such a well worded and heartfelt ,yet non biased post.Having experienced the way Illinois has handled people with disabilities first hand I can safely say places like Murray’s center are rare. Mrs. Rita I’m glad that your son has this place in his life Please endorse the hell outta places like Murray’s Center, focus the conversation on how it has become a home for your son.

Ellen Garber Bronfeld says:
Mar 01, 2014

Wow! What powerful commentary. I am impressed by how articulate everyone is on this topic of community vs institution…and how passionate.
Here is my 2 cents…
I have a young adult son who lives in a group home of three men. They have choices about where they go each day, what they eat, and activities they engage in throughout the week, among other things. That is not typically possible in a larger setting. Illinois’ reimbursement rate for community living is so inadequate that I agree that being able to provide supports and services for individuals with medical needs and extreme behavioral challenges in the community, while absolutely possible, is a battle for the extra dollars needed.
The real issue in community vs institutional settings is the dollars spent. A person in an SODC receives triple or more of the amount of money allocated to those who are living in the community. Many of the people living in the institutions could have more choices and live with less people for far less money.
In our world of limited resources, it is unconscionable to continue to operate large institutions and spend over and above what most individuals need to have a productive, healthy and safe life. I do advocate for closure of our institutions because I believe that if properly funded and planned, community living offers the very best option for everyone. It is, in fact, considered best practice across the country. I completely understand the reluctance and fear of those whose loved ones have made their home in state operated facilities for years, and especially those with higher medical and behavioral needs. Illinois has a poor track record of follow through and our reimbursement rates still fall way below the national average for community living.
To say the least, our state is a mess. While Governor Quinn has taken a pro-community stance, there is still very little leadership in our state that will drive community living forward in the best way possible. With the possibility of a new demonstration waiver (1115) and the 3rd phase of Managed Care coming at some point, I cannot predict if or when all SODC’s in this state will close. What I can predict is that Illinois will likely remain in the bottom or dead last on most measures of funding for individuals with I/DD until we have a single-minded advocacy focus on adequate funding, quality measures and best practice. It needs to come from parents and family members, directed at our state legislature with directions and guidance from the Arc of Illinois and our Director of DHS/DDD…I am not sure we have the leadership or direction needed to create a more cohesive message that will change how Illinois treats people with I/DD.
Until we do, we will continue to fight among ourselves and make our loved ones the pawns in a game of dollars and politics.
Most families whose loved ones are now or soon to be in need of living arrangements outside of the family home, do not want institutional living, so, we need to build capacity in the community and continue to work toward planful and respectful downsizing of our SODC’s.

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