Day Programs do not equal inclusion for people with disabilities

June 25, 2021

I was livid when I saw a day program proclaiming to offer inclusion… So, we need to talk about this. I can’t have you being tricked into thinking that your loved one is going to be experiencing inclusion and a part of the community at a day program. In this video, I give you the real-talk about what you need to know about day programs so that your loved one’s potential to life an Awesome ‘Ordinary’ Life isn’t wasted. Click the video below to learn more.

Leave a comment below! What connected with you in this video?

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  • Do you have a concrete solution? Your comment was ambiguous. In the community special needs people still work one one .

  • Love this! Making families think day programs are “inclusive”. With CMS changes from day program to integrated supports and services – Providers & families will need to rethink how they operate. Then state agencies will have to realign budgets to support people in community. We need to stop segregation in school that leads to and promotes segregation after high school.

  • Biggest take away: need to advocate and stop being so nice.
    I don’t like being the “bad guy” but I will if I have to. Thanks for the words to advocate recently.

  • Very thought-provoking. This brings up more questions for me though. Recently my adult daughter shared with me that she feels more comfortable with other people who have special needs. She said that she feels like she can be more relaxed and be herself when she is with her own peer group. This made a lot of sense to me.
    What you are saying also makes sense, so the question becomes, where and how do we find the right balance between inclusion and meeting the social needs of our adult family members. I see and understand the importance of inclusion, but at what point are we imposing our own ideas of what living a “full” life looks like at the exclusion of what it might look like to a person with a neurodiverse presentation. Where do we draw the line between supporting our loved one towards inclusion vs. engaging in practices of discriminatory ableism in our own ideas of what “inclusion” should look like.

  • Hi. This video brought me back to a couple of my son’s Christmas parties at his place of work. I was his driver and was there through the evening. One particular party still resides in my mind in not a good way. We sat alone for dinner at a table for 10. Two couples sat with us, then left! Can you imagine how I felt? I don’t think my son understood the situation. The message to me is that many in the normal population have to care. Maybe the number that do is greater now than it used to be. One thing that I did not do that evening and I regret now not doing it then, was to encourage my son to go mingle and ‘work the room’, talking to people. That is a strength of his. After seeing this video and taking your courses, I would certainly encourage him to do that today, should that situation arise. I have learned!!

  • Finally – Day Programs the bar is so low. It actually starts from the school board etc IEP mindest – which there is nothing Indivudalized. So, now we are at Day Programs – more babysitting. All of Erinoak new fancy facilities should be challenged in this dept as they are often empty long before COVID

  • With funding limits on agencies and families the ability of staff and /or family to pay for the support to facilitate opportunities of inclusion one on one is a very real stumbling block. As always it is up to us parents to figure out the best way to create an inclusive ordinary awesome life for our family member. This would be different for every family. I think all of us would love to see our loved ones accepted as they are and included in society just as neurotypical people are. We all know it takes time and effort to break down barriers one step at a time to obtain such a goal. Another fight for families to take on who are so tired of fighting. I understand we are trying to reach for the stars but maybe for now one rung up at a time is good enough. If attending day program is the rung we are on maybe guiding day programming to what we would like to see offered in the program is the next rung up.

  • Eric – good video on day support programs – may daughter has attended day support programs thru our Community Living program since she left High School which allowed my husband and I to work – in March 2020 I stopped sending her due to the pandemic and a few days later day supports were ended and she has been home since – now Comm living is re-thinking their congregate day support programs – I am involved in ” Resilient Communities Committee” which is exploring ways to have a more inclusive day- they are suppose to have a “new” type of day support program available late Aug or Sept – we will see how inclusive it will be – if I planned a program for my daughter using her worker as a “coach” then my Passport money would be gone quickly and she would not be doing the “respite” things she likes to do with her worker- perhaps that would be a good change! I am re-thinking what her days could look like with more community involvement since taking your Empowering Ability course

  • Eric your comment on day programs seems correct Still in my world I see many years of systemic development that in the name of “efficiency” leave some folks with little option, support or funding except to turn to the excluded specialty programs. So there are times when programs are “as good as it gets” under the circumstances, energy and capacity of either the family or the community or the larger societal valuation of people who have disabilities or diversities. This is not to say that your push to call “fowl” systemically and demand more is not any less valid! There is a matter of finding somewhere people who work with our loved ones do have training, are willing to accommodate in necessary ways, have the facilities and understanding and flexibility and patience and are currently available. Day programs may be a valuable oasis resource in the desert of resources…even though they are a kind of exclusion. Often the broader world doesn’t have these qualities (yet!) My thought is that inclusion is still a work in progress and as you point out there are maybe options (ones that systems haven’t figured out yet,) that are much better and that are genuinely inclusive and not to miss the opportunity to create this rather than stop at the nearest systemic one. (Our society has not been willing to standardize inclusive design or prioritize financial support of full inclusion and is very much applying “scale of economy” to people as if they are things to be processed for economic benefit rather than being people.) I agree with you. It is how systems fool us into accepting less than full inclusion. I think the “glass ceiling” in disability advocacy is the human energy to change the system whilst also doing the caring. That energy has ebbs and tides and sometimes day programs are the respite in between. I still love your passion though.

  • If day programs are such a bad thing, why was there such an outcry by family caregivers when the Arc Industries program was cancelled? The decision was made by the government in order to save money, and those affected were rightly upset. Obviously the disabled adults that attended were negatively impacted by the closure. Also, the caregivers lost their respite time from their loved ones. I find your reaction rather simplistic. My son attends a day program for adults with an acquired brain injury and very much enjoys it. He feels that he is understood and that it is a safe place for him. Talking about inclusion in this case is a red herring. He feels safe and happy there, what more could you ask?

  • Hi Eric. I sure appreciate your passion! It’s what drives you being ‘livid’ about this topic. As I wrote to you about how I was ‘livid’ about our need to take a course on how to treat staff at mental health facilities so that our child would receive kind treatment from those paid to do so, I too was livid. Very livid. Because to advocate for the mentally ill is a part of my passion in life … because we have experienced the systemic cruelty our son has been a victim of in a very broken system, of which our tax dollars are supporting. So I’ll say this: it all really depends on the individual need of each family. My son is 50. Over the 50 years I have seen people – ‘normal’ people – run in fear from a mentally challenged person at a soccer game, groups of ‘normal’ people laughing and teasing someone different, the visually vulnerable robbed and beaten from being in with the ‘normal’ folks. Thank you for your heart to change society to being caring and accepting. I appreciate your heart.

  • This video made me super angry. I feel you are being very generalized in your negative opinion of day programs and projecting your view onto parents. Instead you could offer parents a checklist of questions to ask when shopping for a day program if that is their route, to investigate inclusion in the curriculum. Much less judgemental. It is a parents responsibility to find a good program that is well run with excellent staff. And yes they will pay for it, mine is $60,000 a year!

    My son attends a very good day program where there are group activities such as art, music, dog therapy, fitness, literacy, baking, crafting, games etc. on site. Some of his peers have been friends with him since they were 6 years old and in school (he’s now 23). Different groups of different sizes also go to the the local pool, library, and bowling alley (my sons favourite things to do) and go on bus rides in the community bus (his best day ever). We interact with everyone in these venues. There is also individualized paid job placement opportunities and individual volunteer placement opportunities. They bake for first responders and take the opportunity to connect at the local fire house and paramedic services. On Wednesdays my son has two workers accompany him into the city to go to different museums, events, ride public transportation, and in the summer go to the beach. I assure you any outing he goes on he is interacting with the public and his community. As a matter of fact he is way better known in this community than I am. We are stopped all the time by people wanting to say “hi”. At the same time he has trained individuals with him to care for his medical and behavioural needs and who facilitate his inclusion as he is nonverbal and has severe DD. Oppressive. Perhaps I could show you a video of us pulling up to the day program door where my son literally yanks off the seatbelt, throws open the door, and bolts from the car before I can get to him. Don’t tell me my son is not contributing to his community because he goes to a day program. That is ridiculous.

    • This is beautiful Alina! I sure wish this was a ‘normal’ reality and that we folks with special needs children did not have to somehow come up with $60K a year to get this kind of beautiful care.

    • I think the issue is not one of whether a person attending a day program does things which contribute to their community- surely there are lots of things people do which are worthwhile and appreciated by the community around them. However, a day program is not helping us attain the real inclusion which is needed. It is still grouping people together based on disability and creates a sense of “othering” from the community. It gives the community the impression that “special” people should be in “special” programs, and not those for the rest of community. This makes it even more difficult for people with disabilities to access typical places and opportunities – as it perpetuates the stereotype that they cannot appreciate/participate/contribute in same way as people without disability. Even well intentioned day programs are furthering this sense of “them” and “us” by its very nature of segregating people. Adults with DD need individualized one on one support from people who will help the person actualize their particular goals and life objectives. This simply cannot happen when catering to a group – the goals of the group can be actualized, but there is no way each member of that group is having their unique best life realized.

  • You gave no specifics in this video. I have found that when my son worked at a fast food restaurant he was more isolated and less included in the community than when he was working in a sheltered workshop. Full inclusion isn’t right for everyone, but this narrative that it’s the only way is making it so that those who cannot be fully included now get nothing. At least before they had something.

  • I agree with you that most day programs DO NOT work toward including clients in the community. In fact, in our experience, the employees took their group wherever they wanted and did what they wanted and just sort of dragged the group along with them. As long as they were out of the building for the specified number of hours. There was no planning, oversight, or accountability. It was horrible.

  • I liked the video how to learn life skills.
    This is exactly where I am with my 21 yr old.
    She’s out of high school in June & not qualified to do anything.
    I am appalled at the school system for how they teach ones who are a bit more advanced than the rest. Some of them cant Count on one hand. Can’t read, or write name. It’s really held mine from advancing. Can’t even do simple math. It’s very frustrating. Choosing a program to help with Life skills is really frustrating. I’m hoping to get her to pick one of them out herself.
    Your right saying “it’s not her fault” she has this problem. So I Need more patience. I’m getting there but still appreciate your reminders.
    Thxs s much.

  • Wow Eric. Keep sending the message that there’s nothing better than an Awesome Ordinary Life and you have shared with families the tools that built the confidence to change the mindset or reinforce what families are trying to achieve and feel supported. Yes, there’s a fine balance and families need to figure out what is right for their family member and include the family member in the entire process to empower them determining their own future.

  • Eric first time in my life i have come across a strong advocate like you.
    I have same questions crossing my mind..Hope there is a better place and way to include children with disability in the community…keep up the good work!

  • Reva Guimont: As usual your messages are well received by me. Day Programs are still an institution of sort, smaller in size and shorter amount of time, still a segregated mindset. When the Community sees a group of individuals who experience disability out in a group and a staff or two with them for support. The assumptions/reputation of individuals living with disabilities is reinforced that is the only way they CAN belong, not as you say valued for what they have to contribute.
    One more thought Eric, as holding responsibility on those of us who are in this wonderful movement. We need to continue to improve our efforts in educating folks the meaning of inclusion, choice and leadership. People, with good intentions, truly believe their efforts are inclusion, choice and person-centered. To quote John O’Brien, “Are we standing on what we’re trying to lift?” Thank you for your contribution Eric and keep the videos and articles coming.

  • Day Programs: What you have stated is the basic truth of the majority of Day Programs There used to be more community involvement with working in normal environments but that has dwindled. Parents are just tired of the continued pushing against stone walls, & advocating for their loved ones.

  • This very weekend I’m meeting with families to talk about enabling good lives, lives like any other, lived well, in community. If you want to stay in a day programme then stay there if it is YOU, the person, making that choice. If you are making a choice for someone else then you have a moral obligation to think about segregation, exclusion and discrimination. The challenge is to ask the right questions to support people to move forward with their lives. Day programmes came about when large institutions closed, for our country around 30 years ago. Time for a reset and rethink. With support purchased using personalized flexible self directed funding, what could you be doing with your life? What does ideal look like? What would be true to make that work? Thankyou Eric, for this courageous conversation. From a parent on the other side of the world.

    • Hi Sue,
      Where are you based ? Is the meeting with families you arranged in NZ ? Are you a coordinator for Care Matters ?

  • Day programs at hospitals are a great idea for older seniors with dementia or another disability to be involved in an activity while their caregiver (usually spouse) goes shopping or to appointments by themselves. They can feel secure in the knowledge their loved one is taken care of by knowledgeable staff (nurses, psw’s). Day programs run in the community seclude our IDD children and do not allow for the acceptance of communities to consider their abilities. They are matched with workers at a very high cost who really don’t allow individuals to develop to their full potential.

  • I see your point, Eric. I have seen day programs that are sadly no more and sometimes LESS than what you describe. Conversely, I have also participated in a workshop that was roughly 50/50 averagely developing/ differently abled. (We worked together on development of employment skills as well as participated in community events such as farmer’s markets, craft fairs, etc. and volunteered at a local shelter. We also had a metal scrapping department.) I am averagely developing. I loved the opportunity to develop trusting, cooperative relationships with all my coworkers. The usual social workplace issues arose and were grown through during my 3 year employment. The workshop has since closed (COVID). What relationships remain? As I said, I am considered averagely developing and have maintained social relationships with exactly 1 of my averagely developing coworkers, and all but 1 of my coworkers considered “special”. The friendships developed among many coworkers continue. I think it is important to recognize the value in finding places to learn and grow. I think it is possible to find community and build community in many different environments. I understand your emphasis on inclusion in “the community” but want to also share the value I experience within the community that we created. Only a few of us drive, so when we go bowling or to dinner or to the bookstore, I suppose it looks like a couple averagely developing people with a larger group of people with special needs. But it is actually community.

    • Cynthia, I agree with your perspective. Our 32 year old daughter with Down Syndrome worked her job for 8 years until covid, now we’re hoping to go back this fall. She was “included” in her work place, but didn’t really develop true friendships there. She also attends a day program twice a week, which she enjoys so much. They cook, do crafts, go bowling and to the movies, swim, etc. It’s within this group that she experiences true community. She is in a group of like minded friends, actual friends, who love her for who she really is. It’s these relationships that being her the most joy.

  • I am always grateful to learn and to be challenged in the way I think about services and life for my son(DS-24). The school system did a pretty good job with inclusion. He had many opportunities and friends in high school. Since high school very few have stayed in contact. My son is not as independent in the community due to much worked on safety skills. We continue to work to improve and giving opportunities to be in and interact in the”community” . I have always had conflicting thoughts about the definition of “community” as it applies to folks with ID it is such an individual preference. If looking at community as fitting in and feeling comfortable then my son has that whether at a concert, involvement with theater or at the adult day program. His best friends and favorite community is at the adult day program. Funding or services offered for families is not always available but the goal is always to improve and making sure it is the person with ID choice of “community”.

    • Hey Niki, So funny I was getting ready to comment on Eric’s video, began reading other’s comments. There you are!! Great minds think alike, eh? I will see you on Thursday.

  • Yes! Yes, Eric, yes! I’ve had this on my mind and heart as well!! I see this even in churches, offering a disability ministry! My daughter (DS-22) does NOT want to be in any of these places, whether it be work, church or leisure. she has been in a “real” inclusive environment all her life until we came to the US….Now that she is a young adult, she doesn’t seem to “fit in” anywhere….It feels like that sometimes, at least in our case…. The downside of inclusion! I think that people with IDD who grew up in the SPED system and then on to transitioning into day program or vocational services don’t experience it quite the same way….

  • I agree with you. However sadly there are not many options available to keep people with developmental disabilities busy with their life.

  • Our adult children with disabilities still live at home with us. There are three of them. One of our children who has Down syndrome is very independent. He walks to the library, does his own shopping, and makes friends easily. The other two, One has Down syndrome, the other has severe autism. I have to accompany them everywhere in the community, but we still do it. People see us walking everywhere, so that helps the community, but I would love for them to be more independent and be in a situation where friends would accompany them places etc. They both can do crafts and possibly sell them but we haven’t made that happen yet.

  • Thank you for confirming that! You are correct including, we are ‘ too nice’. My son is transitioning into ‘community’ June 2022 after highschool. Unless, I hire a private 1-1 worker buddy, our son will require some form of day care type program. On one hand I feel it could be positive that he will be with peers and on the other hand am I perpetuating and supporting a historically systemic segregated system? My vision for my son is a community participant not bystander.

    • As a full-time working mom of a 14 year old who has aged out of summer daycare, I agree. Our choices are limited. For the summer, our choices are: Sped summer school for 3 weeks where he completes a list of “jobs” each day (in prep for a real job) with very limited contact with people, a day program for 7 weeks with a group of peers who go swimming, the park and make things OR a patchwork quilt of different “inclusion” program every week. At this age there isn’t a consistent week-after-week program available in the community. Since my kiddo is ID and ASD and thrives in structure, I choose the day program every time

  • Sounds like the special ed preschool that told us they definitely “do inclusion.” When they said that, they meant they went to recess with a mainstream class once a week. Anyone who talks about “offering inclusion” makes me cautious these days.

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