The recent history of institutions is still having a huge impact on how people with developmental disabilities are being forced to live today. Today it shows up with the group home model. BUT, I’m noticing that this institutional living model is also showing up in our minds… with the thinking that it’s best for our loved ones with a developmental disability to live together.
In this video, I help you shift out of the institutional mindset and to think about creating the best home environment for your loved one. Click the video below to learn more.
Leave a comment below! What connected with you in this video?
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The group home paradigm is by and large well meaning, being a family style situation. However, because there’s next to no oversight and residents have no say in any part of the group home operation, abuse is fairly common.
Also, the houses group homes tend to be located in are typically designed for two parents and two or three children, and thus typically have just one standard bathroom for all residents to share, with the exception of the caregivermanager that gets the master bedroom with its own ensuite bath. Now, 3+ adults sharing a standard hallway bathroom on a daily basis is often a nightmare! Privacy is diminished. Lining up to use the bathroom? No thanks! Not to mention, some residents may have more stuff than can fit into a small closet.
Not to mention, you’re supposed to be your freest when at home, and the rules and regimentation in most congregate living homes, (another term for group homes) this type of freedom is practically impossible! These homes often have long lists of rules and features such as
* rigid schedules for bedtimes, wake up time, meals, outings, etc
* no choice of what to eat
* dress codes
* a ban on wearing hats in the home most of the time
* requirement to get permission and supervision to go in the backyard
* requirement to attend a certain church (some group homes)
* group home managers determining what sort of employment residents must get. usually limited to low level fast food and retail
* no eating or drinking anywhere but the dining room, and maybe the backyard
* and a kiloton of others
Basically EVERYTHING is decided by the higher levels of staff in the group home. What residents eat, where they go, etc!
Are you really free at home when every activity, schedule, etc is dictated by the staff of the facility? That seems more like prison or the local mental hospital to me! Sure, this straitjacketing may be necessary if the home caters to those with behavioral and impulse control issues, but apart from that, people with neurological andor psychiatric disabilities can be trusted with a bit more freedom than a typical group home unless proven otherwise.
The AFH (adult family home, another term for adult group homes ) paradigm tends to be fairly infantilizing due to many of the above listed factors. Residents are practically treated like minors.
I was in a group home before there were things I didn’t like I live in Canada and that’s the best we have to offer apparently there have been huge cuts in healthcare etc and aging populations are making certain things too much in demand and due to schizophrenia well I’m alienated from the rest of my family because stigma still reigns true today so yeah idk I feel defeated Im currently living in my own apartment but due to lack of motivation extreme pain and wanting to spend my time on the computer due to all the above and a bunch of other medical problems I see no way out love in this world is dying out for me so I need to be put in a box to rot somewhere that’s the reality I’m facing since my older brother screams group home so does my Dad and my mom? The only one that wants to see me happy and independent but I can’t face up to how unclean and hard its getting to go up and down 3 flights of stairs with a bad right hip bad left knee and bad shoulder rotator cuffs that flare up from time to time without enough rest. bad nose too so surgery is hard to get with sleep apnea as well Im also obese so perhaps meals made for me would be a good thing. I love either side of the story but some people need it more than others such as myself 🙁 with no family that gives any cares
I send my daughter for respite occasionally. One weekend per month, before Covid. It is in a nice large home, that accomodates 4-6 adults at various times. Seems like a group home, but is a home that is shared. This is the scenario my daughter wants to live in. What do you call 4 adults living in a home or sharing a home? Is there such a thing as a private home? Thanks
You’ve told us how a home with more than 1 person with DD is a “group home”, but you haven’t shared with us those creative solutions to develop an ordinary home for our loved one.
Hi Kathy, I invite you to check out these two resources on creating individualized home:
1) Podcast: home: https://www.empoweringability.org/9insightsonhome/
2) Video: https://www.empoweringability.org/creating-home-on-demand/
– Eric
Not all dwellings where several non-familial people with neurological disabilities live together is a group home. It’s really only a group home if an agency owns and runs the house itself, and when there’s a live-in caregiver. It’s totally possible for those with less severe neurological disabilities to live in a standard roommate situation.
Exactly right
I thoroughly agree with the video on living situations. I had regular arguments with adult transition services over adult living situations along with expectations.
Our son is 30 years old has Autism and still lives with us. We are both retired and our son works a part time job. I don’t see a group home situation working for him. The constant chaos would be frustrating. We do want our son to be as independent as possible. He would require 24 hour staffing. I’ve been considering a small house for him on our property so we could still keep and eye on him but provide us with some independence also.
We have a 28-year old daughter with intellectual delays and autism. She lives at our home but we are considering options where she can live in a home of her own with some friends. Your video did a fine job describing the dilemma we face, but I’m not sure what alternatives you are suggesting
I am in the exact same boat with my 28 year old son. I was able to get him a house of his own (with financial backing from his grandfather), but I live with him for now. I’m thinking of eventually bringing in a neurotypical roommate, but Im not sure how that would work.
I’ll be releasing a video on Supportive Roommates soon!
Hi Chris, I invite you to check out these two resources on creating individualized home:
1) Podcast: home: https://www.empoweringability.org/9insightsonhome/
2) Video: https://www.empoweringability.org/creating-home-on-demand/
– Eric
What are the alternatives?
Hi Debbie, I invite you to check out these two resources on creating individualized home:
1) Podcast: home: https://www.empoweringability.org/9insightsonhome/
2) Video: https://www.empoweringability.org/creating-home-on-demand/
– Eric
Our adult daughter has autism with high anxiety.
Our dream is to create hobby farm for her and others like her. Hobby farm setting provides environment and space where participants or residents can be themselves, have choices, free from judgement by others, meaningful activities (or even jobs) when they choose to. It can be open for public when no pandemic.
It will not be easy to create such place, but we would like to try. Wondering if any other families have similar dream.
We have similar situation with our daughter and are thinking along similar lines. I would like to share ideas with you.
There are many ‘ordinary’ hobby farms that already exist. Have you considered what it could look like for your daughter to be a part of that community? This could be something to experiment with in a low-cost and low-energy way that will give your daughter more perspective. Thoughts?
I love the area you live in, beautiful.
I worked in group homes and left because the companies were more concerned about the income they received from the residents then the care the residents received.
This can be seen as a generational opinion that the disabled can never have the ability to live alone.
Thanks for fighting for a better tomorrow.
I totally agree with you. My family is relocating to a different state and I’m setting up my home to be a group home, and that is the model that I have in my mind. It’s not about finding people to live here but helping the right people live their best life where I would live if I didn’t have to move. Your video was definitely on point and gives me affirmation that I’m on the right track. Thank you
Hi Lauren, Instead of having a home with multiple people with developmental disabilities living there, have you considered what it could look like to have a supportive neurotypical roommate who might provide more natural support?
I am a parent of a special needs adult with severe autism. Safety (ours) is a huge concern and we are terrified of what will happen to her when we die and when we can no longer physically care for her. She is certain to live well beyond our death. There are many people like us who will not be able to care for their adult children and see no opportunities for them, as they, like us are often shunned in society. I have what I think is a creative solution that I would like to share with you. It involves parents living in community with other parents and forming our own community with meaningful job opportunities for our children and transitioning in caregivers or family to take over when we pass away. The community would have a board that overlooked the care of the residents and monitored their well being. Thoughts or questions are welcome.
If interested I could send you the concept idea in a powerpoint I just need an email address
Hi Michael, Thank you for sharing your idea. There are a few challenges with this idea that I ask us to consider. 1) It segregates people with developmental disabilities and their families from the ‘ordinary’ community – which places additional strain on families will less access to ordinary community supports. Families already have a strain on them and don’t have the ability to try and support other families in the way you’re suggesting. 2) This segregation tells the ‘ordinary’ community that people with disabilities and their families are ‘the other’. This pushes us further away from the goal of inclusion for all.
A better solution is for a person to live in an ordinary community and access the support that a community can provide.
I worry that we dont have family that will take ANGEL once we gone. She has regressed BACKWARD during COVID and her brother and his wife say they will watch her but they don’t make informed decisions about natural meds for Angel like I would rather than prescription drugs. So yes IDK what to do with her right now. She is 16, non verbal, and not even as independent and trying to communicate to us in non verbal ways like she used to. She is very loving and affectionate. Peeps we knew locally would say HI to her and let her hug them and touch their faces. And when COVID fear and panic porn hit SO HARD – Angel could sense it and I think in many ways she has SHUT DOWN. We had no in person therapy for over a year and now they can’t handle her in therapy. How would I get that for her at home so she can start returning to my lovely Pre Covid Angel that we had come SO FAR FORWARD with. Feel free to reply by email. Thanks
Hi Tonya, The pandemic has certainly been a challenge for our families. You aren’t alone in this experience. I can understand some of the challenges you’re experiencing. A return to where things were before COVID might be slow – but you can get there. I can’t advise you on specifics, but continue to advocate for the support that you need! Asking for help is the hardest thing to do, but it is what we need to do as families.
Hi Eric
Liked the message a home is a place you live not a place of work with a loss of choice and control. “Creative”?
I have a 21 year old intellectually disabled daughter. I work at the state mental hospital where a whole lot of the IDD population is misplaced. I 100% agree with everything you said. There is also a huge disconnect in the people that are paid to care for the disabled. It’s just not the same as having family around. The way they are spoken to and treated is much like a misbehaving child. I cringe to think that my daughter would end up in a place like this but I also won’t live forever so I’m left in constant fear.
My daughter is 30 and that is my biggest fear as well.
The common insidious argument used to defend this dominant institutional model is “the people/family have made the choice to live there.”
As Connie and John O’Brien have talked about many times, citing “choice” when it isn’t REALLY a choice – when families are not offered equivalent resources for an “own home” solution, and when individuals don’t have the experience or opportunity to make other choices, and they no bloody well their current situation is highly dependent on how group home staff feel about them – asking them if they are “happy” in the group home is straight up dishonest. Where in the history of the world has any person with support to live in a home of their own actually said “Gee I’d rather just have a room in a house owned by an agency shared with 5 other people and 16 different staff.”
No one.
Let’s have the conversation.
Let’s stop the lies.
Hi Keenan – Lynne Seagle also shouts this message from the rooftops. Here’s a podcast I did with Lynne if anyone is interested: https://www.empoweringability.org/uncovering-the-truth-we-are-oppressing-people-with-disabilities-with-lynne-seagle/
Yeah, I’m pretty sure that nobody dreams of living in a congregate livinggroup home!
Thats right but what leaves me thinking without support how its possible
Hi Sapna, When creating an individualized home for a person we are thinking about what the right supports are for a person… including family support, natural support, self-reliance, and paid supports.
Hooray! Someone after my own heart!! I have worked with the DD population since I was 16 years old (I’m 62 now) Before becoming a special education teacher, I worked in many group homes along the way. My master’s thesis was comparing group homes to living independently. Over the years I witnessed abuse of residents, privilege’s taken away, staff sitting around with each other paying no attention to the residents, and making up data to turn in so it looked like they were actually doing their job. Most of the employees resident managers hire are young (18- late 20’s) who have little to no experience and will accept the low wages that these agencies pay. There is no formal training, no incentives for the staff to work toward and the turn over in these places are rediculous.
I am now trying to do something about it myself. I am forming an online business (www.yourautismwhisperer.com) to promote independent living. I would love to know more about what you’re doing. How is it working for you? I loved the video.
I don’t know what the complete answer is. I’ve been operating my 2 daughters group home for 28 years. They both have physical and developmental disabilities. It’s as close to a home as we can get. We also live nearby. MaryJo
Amen! And so many support companies here only support group homes because it’s more profitable 🙁
I agree with you , living in a group home would not be the ideal situation for my son , they grow when they live independendly.
Our son is currently in a group home with three other residents. He is very high functioning with severe behavioral issues, and the other three residents are completely non-verbal and do not interact with anyone. I worry about our son all the time. He is bored and lonely, and who can blame him? When I have mentioned getting another resident with a similar background I am met with resistance as they have tried that, and our son tends to manipulate and plot with his peer to do negative things. I fear that if he were not in this group home he could potentially end up in jail. We are in the proverbial spot between the rock and very hard place. I should add that his father and I are both in our 60’s and have 3 others at home with disabilities.
Hi Juliana, Sometimes families are put between a rock and a hard place and a group home become the only option. So no judgement from me.
However, even if our loved one is in a group home we can think through what the best individualized home is for our loved one and advocate to agencies and government for that individualized solution. There are organizations out there that are closing group homes and creating individualized solutions – but family pressure needs to be applied for change to happen.
Hello Eric,
I have been thinking to seek for your help, if possible.
Our daughter has autism and has lived in group home since 2010 when she was in crisis.
But now she’s been with us since last March, because of the pandemic, and she has been doing great !!
She has much less anxiety , enjoying life, learning more skills with us at home. We would love to keep her here with us forever if possible. But we are in mid 60 and not mortal. We cannot give up the residential spot (= fund) she already got. She is really good when her anxiety is low, but becomes very very loud with her vocal stim for hours, even screams a lot when having pain or upset about something when anxiety is very high, (which are so reduced lately while at home). We know her needs clearly.
You have mentioned ” There are organizations out there that are closing group homes and creating individualized solutions ”
Could you advise me what and where those organizations are? The current agency is industrialized, no interest in these individualized solutions.
and more, if possible, I am wondering if you could help us in some way.
I am the one keep thinking about “Hobby Farm” Hobby Farm can give freedom and very meaningful activities of their choice, for each participants. It can be the participants’ or residents’ base, not being confined there at all ! It can be open for public, can become social enterprise (if becomes successful), that can offer many possibilities, meaningful activities, including jobs, for participants, residents, even for regular ordinal people who also can assist participants at the same time.
I had made business plan and talked to a couple of politicians, but not going anywhere (yet), then the pandemic came. The land price became too high lately that is making our plan harder also…
But we still want to pursue our dream.
It is hard to think alone, do alone.
We are living in Toronto.
(I love Erin, but the land is so expensive there…)
I am wondering if you can help us in someway if possible.
I greatly appreciate your thoughts, any information of agencies, families who could connect with us.
hope to hear from you.
Sincerely,
HM
ps. you are doing awesome job for us all. Thank you.
Hi HM, It is great that your daughter is doing well. There are some families that have successfully negotiated an individualized budget for their loved one when a group home wasn’t working for their loved one. I haven’t done this myself, I just know families have done it with the support of a third-party transfer agency.
I don’t have anyone that I can refer you to, but you can start asking questions to the current organization, other organizations and to the government.
It will be important for you to have a vision of what better would look like. The Plan My Future course is how I support families to create an Awesome Ordinary Life vision with their loved one.
So curiosity… asking lots of questions.. and asking how other families got individualized funding and also creating a vision of what would be best for your loved one.
I hope that helps!
Love it
I love what you said but what if the person has severe intellectual, psychiatric and behavior issues? What if they are 17 and facing life in a group home? What if they have older parents who don’t have the stamina or the will to handle this person anymore? They don’t want that but what are the other options in this case? :*(
Hi Jo, Thank you for sharing your situation and the question. There are examples of people with severe disabilities using individualized thinking to create the best home situation for them. Unfortunately, I’ve seen that it often takes relentless advocacy (depending on where you live). Are there others that you can ask for help, that have energy, to support you in advocating for an individualized home for your loved one?
Hi Eric, I so agree with your perspective. Our son lives in a group home and his independence is impeded by the rules that are needed to serve the greater group. While he loves most of the caring and kind staff, some of the housemates are not a good fit for his sensory system. I love what you say about offering choice and control – there is so much more freedom and potentially less stress induced by housemates in a supportive scenario for just one.
You have perfectly described the type of home I am seeing pop up locally, that I have thought would be a good fit for my daughter in the future. 2 or 3 or 4 people living together, sharing support. It never crossed my mind it was following a group home or institutional model. I saw it as a shared home with shared support. But I see your point. However, I feel if it is set up correctly it would be more like a true home. My daughter cannot live without support. So I dont know what else youd suggest? Family cant be with her 24-7. So in order for her to enjoy her own home away from us, being as independent as possible, what other model would you suggest?
Hi Kim, I invite you to check out these two resources on creating individualized home:
1) Podcast: home: https://www.empoweringability.org/9insightsonhome/
2) Video: https://www.empoweringability.org/creating-home-on-demand/
I also have concerns on who would take on the responsibility of caring/supporting my 28 year old son with Down syndrome once we are gone if he is living on his own. With siblings living out of state, how do you plan for long term care?
Hi Liz, I invite you to check out these two resources on creating individualized home:
1) Podcast: home: https://www.empoweringability.org/9insightsonhome/
2) Video: https://www.empoweringability.org/creating-home-on-demand/
Our daughter is in her mid forties. She’s lived in every type of living situation available (institution; cottages at State Hospital; group homes with 1; 2; 3 & 5 roommates; living alone in a duplex and now in her own home for the past 12 years.
The reality for individuals with intellectual disabilities is transportation and levels of communication involved to connect with another person(s) to participate in a community activity.
This was difficult enough and then add in covid-19 and the loneliness factor grew exponentially.
We are now in the process to purchase a condo in a building bring built specifically for individuals with disabilities; caregivers and families. It is like a 55+ community but for individuals with disabilities.
Where is this? I’ve read about housing like this but I haven’t seen anything like this in New York. I feel like there aren’t many choices for individuals who need some guidance and support other than group homes or independent apartment living. There are no choices for ” in between”.
Yes, this changed my mindset a bit. My father worked in a local group home, my daughter is 16, with Down syndrome. I have considered a group home for her once my husband & I can no longer care for her. I think it’d be awesome to combine college student living with these individuals. The students would be those going into fields to work with the handicapped. Like OT/PT/SLP, nurses, social workers, etc. They would get a break on rent and gain valuable experience & real life understanding of these individuals.
The workers were in PPE because states categorized group homes to fall under nursing home guidelines
What video do you have that shows how to have someone who is developmentally disabled to live on their own & what funds are they entitled to so they can afford this?
Hi Christine, I invite you to check out these two resources on creating individualized home:
1) Podcast: home: https://www.empoweringability.org/9insightsonhome/
2) Video: https://www.empoweringability.org/creating-home-on-demand/
Our son is 23 years old and we fully anticipate him living with us in our home (his home) until his father and I are no longer able to care for him. Once we are too old to properly care for him, or, God forbid, we pass away…what would be the most appropriate setting for him? What if there are no family members or friends who are willing to take on the responsibility of caring for him? What setting would be best for individuals who have intellectual and developmental disabilities and require around the clock supervision?
Hi Danni, I invite you to check out these two resources on creating individualized home:
1) Podcast: home: https://www.empoweringability.org/9insightsonhome/
2) Video: https://www.empoweringability.org/creating-home-on-demand/
Thanks for sharing your thoughts in this video. All good considerations that I will be watching for as our daughter tries out a group living experience starting June 2. This is something I never thought I wanted for her but so far, we are feeling positive about the prospect. Time will tell. I’ll be on the lookout to ensure that she feels comfortable in the home and hat she has choice and voice. I would have no qualms about pulling her out if it isnt working for her.