If you build it, we will come.
As my child, and we, get older, I’ve been thinking a lot about our living arrangement in the future. I wrestle with wanting her to live with us forever but knowing we won’t live forever. I see and feel the cumulative effect that years of care-giving, including regular, significant sleep deprivation, has had on us. I know that it would be good for her and us to have some separation, some distance, in the same way our son, who is going off to college in the Fall, will have.
In a perfect world, there would be many options from which a family could choose. But what I see “out there in the community” now is far from perfect with very few options available for a large group of soon-to-be young adults with autism.
When I’m up in the wee hours of the morning, the questions haunt me. Where will she go? Will she not have a choice and end up in some other part of the state where we’ll have to choose between moving to be closer to her or seeing her infrequently due to our need to work until we’re 82? Will she understand why she isn’t living with us anymore? Will she think we’ve abandoned her?
Who will care for her? Will they be good to her? Will they “get her”? How long will it take for them to know that when she takes the milk and butter out of the fridge, she’s asking for Annie’s mac and cheese? Will they try and get her to sleep with her head at the head of the bed rather than the foot of the bed where she has comfortably slept for years now?
For a long time now, I have had this picture of, for lack of a better word, a village, where families of kids on the spectrum live. It’s a quiet urban space filled with lots of greenery . . .
One day I was talking with fellow parent, Tricia Elsner, about this topic and she and I had a lively discussion about what could be. We decided to take it to a support group of fellow parents whose children have significant behavioral challenges.
We began with this premise: Pretend that money is no object. That land is available. Let your imagination run wild. In a perfect world, how do you envision an optimal living arrangement for your child?
While we all had our own preferences about what this place would look like, it wasn’t surprising that we agreed on the vast majority of things. Here’s what we came up with . . .
Location
Since we’re all city people, we decided we want to be in the city rather than a rural area. An urban, park-like space is what came to mind. However, the suggestion by one mom of living on our own island did sound appealing to many! We want to be on bus lines and within walking distance of community places such as stores and parks.
Layout
We want simple, affordable individual single-family homes (designed with our kids in mind) rather than one large structure such as an apartment or condo building. These could be townhomes or cottages – not tiny but not McMansions either. And each can have its own personality – no cookie-cutter homes or restrictions on what color you paint your home! If you want Thomas on your front door, so be it!
Features
The key features we agreed upon dealt with safety, convenience, privacy, dignity independence and fun. If you are a parent of a child with autism, you won’t need an explanation for most of these:
- Soundproofing in all living areas
- Fully gated with additional safety-features throughout
- Central Air Conditioning and Heat throughout
- Lots of greenery with low-to-the-ground trees to climb
- Outdoor play equipment such as swings and slides
- High tech capabilities for all spaces, such as super-sonic fast internet service that never fails! But just in case . . .
- IT assistance at the click of a mouse
- Adequate back-up generators for power-outages
- Crisis intervention/rapid response behavior team on call
- 24-7 staffing tailored to each family’s needs
- Large passenger community van for group outings and appointments
- Services for parents who are aging themselves and may need more help one day
- Guest quarters for out-of-town guests who want to be close by during a visit
Additional Structures
In our village, we also picture community-gathering places such as:
- Community Dining Area with free coffee all day long, meals and snacks available should you not feel like cooking on any given day, and oh – a ketchup fountain (our collective imagination got away from us) along with menus for all types of special diets.
- Community Leisure Areas, including swimming pool complete with lazy river and waterfall features, sensory-seeking delights throughout such as ceiling fans and walls with various textures, a built-in-the-floor trampoline, mega movie screen, open space to run and ride bikes in rainy weather.
- Retail and Professional Space available for lease to those who have products and services geared toward our families.
- Additional Housing, including separate respite quarters for parents who need a break for a night or longer, and living units for home care assistants that could be rented.
Programs and Services, including:
- Educational classes for all
- Skill training for all
- Leisure/fun/health opportunities for all
- Counseling and support groups for parents (some parents requested that Lynn be on call 24-7. Sure, said Lynn.)
What else did we discuss?
We were open to families who do not have kids with autism living in this community. The point isn’t to isolate or segregate. It’s more a “birds of a feather” kind of situation that it would be nice to live amongst others who “get it”.
Some parents wanted the option of being in the same village but in distinct living quarters than their child, particularly for those who are getting to be young adults. Perhaps some young adults would want to live together at some point.
Is it Possible?
Perhaps I missed it but I couldn’t find anything that currently exists that even closely resembled our village. One dad commented that what we described sounds much like retirement/assisted living communities for seniors. Having worked in this field, I do recall that older people with developmental disabilities mostly were not welcomed in communities designed for seniors.
Maybe it sounds fairy-tale-like to even dream about such a place but why shouldn’t we dream about what we hope for with our kids? Maybe there are others out there who think like we do and have the means to make this a reality. Maybe you are one of these people reading this right now. Maybe you could make a difference in the lives of many.
Just maybe . . . if you build it, we will come. Give us a call or send us a post!
Here are some links to some communities I did find online:
http://www.sweetwaterspectrum.org/home0.aspx
http://www.thesunridgeranch.com
Thanks to our wonderful group of parents for daring to dream big! Thanks Tricia, Amanda, Jamie, Heidi, Janice, Joy, Erik, Melanie, Katrina, and Diane!
The problem is that most of our loved ones receive or will receive federal/state money for services. With those funds, there are restrictions and the restrictions are getting more and more narrow with their definitions of “Community”.
We hear so much about person-centered care and choice yet these two values are being diminished by those who believe they know best what our kids need.
The laws regarding how close you may live to another person with DD or how close you live to an institution eliminate this choice that all other individuals in our society have. People with DD are not allowed to congregate because many fear that will lead to segregation. This is far from what would happen. Why aren’t people with DD allowed to choose who they prefer to congregate with – everyone else seems to be allowed to make this choice.
As a parent of a 19 year old who lives at Fircrest – a campus, supported community (a state operated residential institution) I see that this campus setting with stable staff is the best option for him at this time. He is allowed to make choices which matter to him, he has friends there, he loves his staff and he has relationships with his housemates. He is close to home and the community in which he has lived his whole life and has frequent and regular contact with family members and community events. But most of all, I know he is safe and he is happy.
There is real community there – although you won’t hear about it form so many of the vocal DD advocates who believe this type of residential setting is restrictive. It is far from restrictive.
As I was on campus yesterday tending to the gardens which I volunteer at and work with several residents, I watched as there were two of my son’s housemates out for walks. Seeing that they are allowed to go for walks when they desire (most are not street safe) is critically important. Many have an insatiable need to be in constant movement and if the setting was restrictive (fenced in house in a community neighborhood) these people would essentially be imprisoned. This imprisonment would lead to increases in self-injurious behavior, property destruction or aggressive behavior towards other residents or staff.
Those who talk about community living in dispersed and scattered homes do not understand the issues that are needed to best serve those on a continuum of care needs.
I am currently working with various community groups throughout the US to tackle this very problem. We are all in agreement that we need to have a choice which includes inclusive communities, campus communities and a continuum of care. Here is a link to an article regarding this very issue. http://www.ageofautism.com/2013/07/will-government-limit-a-spectrum-of-housing-options-for-autism.html#more
Hello, families,
I know your original post was a while back, and I wonder how you’ve progressed with your wonderful vision. You’ll be happy to know we have a very similar one, which means we are not dreaming unrealistically, but yearn for true community for our children and ourselves.
We are moving forward, as I hope you are as well…
deb finck
Hi Deborah. We are still dreaming and hoping. We’d love to hear about your developing community. How exciting! Please share it with us!
Hi Cheryl,
Your post is most inspiring. My son is 32 years old and is diagnosed with Autism and recently Bi Polar. He has such a good heart and people just love him to death, but he also elopes into the community when he gets anxious and it turns to aggression (breaking people’s mailboxes), kicking dogs and pushing people down in the community. he is 6’1 210lbs. He was sent to Rainier as a diversion bed relief after ending up in the ER due to his mania and aggression. He didn’t sleep for 2 weeks! He was evaluated and put on medication, and then released back to his companion home. His anxiety returned. The last 3 years have been a nightmare for those that care for him and even his psychiatrist is at a loss. He is too much for 1 person to handle.
Part of the problem is the community is not able to be a support for him. Example would be when he elopes, he falls down on the sidewalk hoping someone will call 911 so that he gets the attention from the ambulance crew. Someone is always with him when he elopes. Even when we say to the public, “this is normal for him. He’ll be ok”, they insist on calling 911. Vicious cycle. The neighbors are tired of their mailboxes getting destroyed. He has destroyed items in his house (TV’s, dishes).
Getting to my point, I truly believe there is too much stimulation in the typical community for my son to handle. I also believe that some of it is he knows he gets results. He’s been in group homes and got kicked out. He’s had companion home providers, but they get burned out from his constant needing attention. The supportive living agencies have tried, but they can’t keep him safe. It’s getting harder and harder for him to participate in Special Olympics and the Park’s program. They have all said he can no longer return.
I don’t see anything wrong with places like Fircrest. In some cases it is better for them. It’s not like the institution shown on “One flew over the cookcoo’s nest”. Why is it that some of our adults do better in places like that? It’s because there is structure and a sense of community. There are more staff to support. My son is on so many psych meds and lorazepams he shakes from parkinsonism and can’t even speak clearly. It isn’t helping him become a better member in the community. The sad part is, most States are shutting down the RH’s. If there was a better option in the community I’m all for it, but I don’t. I’ll be judged for my decision as I’m sure you were too. Thank you!
We have formed the Shoreline Community Lifelong Learning PTSA to address many of these issues you have addressed. We have several projects in the planning stages and would love to meet with you to discuss options and plans for the future.
[email protected]
When can I move in 😉 Sounds AMAZING!!! Thanks for sharing your dream 🙂
Thank you for this post, this effort, this well defined framing of what keeps parents up at night! Add a garden to get affordable, fresh, healthy food and great recreation at the same time. The sensory benefit of having your hands in soil is awesome for many. What a gift for a community such as you describe for their residents to have friends and families live or visit. This is about pooling resources to achieve the highest quality of life. Cooperative living is the future for all of us in one aspect or another. Thank you for this post!!
There is no doubt Lynn that exactly what you describe needs to be an integral option for families raising children on the spectrum in Washington state. However, until the laws in Washington state are changed to allow what DSHS claims is “institutional living”, instead of effective supports, we’ve got a long road to go. The first step to realizing the wonderful dream you’ve outlined is changing the definition of what the state sees as effective adult supported living options, including cooperatives. The cooperative model is flourishing throughout the US, why not Washington state?
Lynn, I just love this article. Also having a son significantly affected by autism (as you know:) I think of this constantly, and then periodically just stick my head in the sand because I become overwhelmed. It is a frightening thought to worry about the future for our very dear children.
Thank you for talking about this. I dream about an arrangement like this for our son.
I live in ellensburg (the location of the sunridge ranch) and I am very impressed with the housing model. The hard part is finding such a place. At the moment, they only house 4 adults. I jokingly said to my husband that maybe if we get him on the wait list now, he may have a spot (he is 2). I would love to see similar housing options open up for our children. I will keep tabs on this group and would love to be part of a discussion about this topic.
Nobody’s going to do this for us. This kind of model needs to be implemented soon, and it needs to get serious, and we need to come together. Crowding DD people in group homes while forcing, either through legislation or withdrawal of support to DD persons living in the family home, has got to stop. The separation of parents from their adult DD children, many of whom will never be “independent,” has got to stop.
If this is a priority for you, I am gathering all resources for designing and funding a similar model to what has been described.
I invite discussion and feedback on the following “wish list.”
1. An interpersonal network that gathers—in this case, definitely in proximity—a manageable number of extended family units, which means: a specific kind of property, appropriate subsequent development (definitely the ideal would be modification of existing), relationship-building with zoning authorities and local communities, creative distribution of public and private spaces, and very smart planning in terms of governance and cooperative ownership.
2. Adaptive housing that addresses common and specific issues of: safety (e.g.: gates/fencing); behavioral issues (e.g.: compulsively running water; common areas for activities such as gross motor, etc.
3. Quality shared provider service in treatment and care delivery so that caretakers can retain a requisite level of autonomy in work-related activities to mitigate care cost/stress level burden. Some service delivery may need to be on-site, which presents issues of the legal status of: the village, the property acquired, and level of governmental agency oversight.
4. Advocacy and outreach for integration into the surrounding community, and/or replacement of services typically provided in that environment, possibly involving utilization of internship/continuing education for volunteers, which would call for the involvement of service professionals (e.g.: adaptive communication).
5. Brainstorming regarding flexibility to maximize the possibility for lifelong care of members that makes best use of the multi-generational resources. It may sound radical, but if taxpayers are willing to routinely transition ASD adults into public foster care situations when parents are no longer able to care for them, surely we can explore a means to extend caretaker independence to help ensure continued support through interdependent care bonds for the lifetime of the individual with ASD and family members.
Thank you.
Any other news on this? I can’t remember how old this post is. But my fellow ASD parents and I in Vancouver, BC frequently toss around ideas of such a community. I think it would be awesome to network, and I think doing so in the international community would be beneficial.
Hi Adrienne, I am in Calgary, Alberta. I have aspergers and was looking up community living for autism when I saw this page and these comments. Are you still checking back here? If so, leave a reply, I am very interested in talking to people who want to make this happen. Perhaps as a group, we can.
Please, for all of you interested in working on a project such as this for our children and others, contact me. I was asked to be part of a national grassroots collaborative called Coalition for Community Choice and one of the issues is intentional communities – much like the ideas expressed here.
We can do this but it takes more than one or two people. I know we are all busy but we can network and inform others of these great opportunities and choices.
http://becausewecare1.com/coalition-for-community-choice/
contact Cheryl at [email protected]
Communities are our Only answer for our children. What is the plan?
Excellent idea! Very helpful. Lots of people does not understand autism and how hard it could be. Support from family, friends are extremely important. Also, getting involve in communities, learning from others experiences will greatly help.I’d like to share these tips too http://livingautismnow.com/how-to-become-your-own-childs-autism-advocate. Cheers!
I’m so happy to have come across this article, I have been dreaming up this very community in my mind! Any progress? I would love to get involved.
Hi Tessa,
It’s still a dream as far as we know. Has anyone heard of any efforts to design or build such a community? We’d love to hear about it!
This has been my dream as well. My son is 24 years old with classic autism. I am an aging single parent and am having more and more difficulty everyday caring for him alone. I really do not want to place him, but the current system does not give me a choice. We live in New Jersey. My dream is a community where my son and I can live together in the same home or development with all the supports that we both need. Not just physical supports, but emotional supports. My biggest fear is being alone with my son and getting sick with no one to care for him or about him. A commune where we all take care of each other and all our loved ones. One big family so to speak. That is what we need.
If something like this exists please let me know. I will move anywhere. If people are out there making this dream a reality, please contact me.
Hi Gaye,
We’re still waiting to hear from those who’ve successfully launched something like this. As always, funding is a key issue. For one insight into the complexity, see the following. There are many angles from which to view it.
The Federal Government’s Quiet War Against Adults with Autism
4/19/2016 Opinion
Though few are aware, a new policy threatens nationwide dismantling of autism-friendly adult programs and housing
http://www.sfautismsociety.org/blog/the-federal-governments-quiet-war-against-adults-with-autism
we live in NJ, too, and have two with ASD. The isolation and loneliness are killing me, as well as a fear what will happen tomorrow when I am older and not capable anymore. I am dreaming of this community, too! Would be willing to pick up and move, wherever it is.
Dear Sanja,
My heart goes out to you as you continue to wrestle with the challenges of today and the future. Please reach out to someone, anyone, for help. It’s unfortunate that help doesn’t seem to come to parents without a great deal of effort on their part to find it and at times beg for it. If you find it hard to ask for help, ask someone to do it on your behalf. What’s available might not be the community we dream of but perhaps there is something that could make life a bit easier for you.
Lynn
I’ve read so many similar ideas and am encouraged to know that there are so many of us parents with the same idea in mind. My son just graduated (he is 22 years old, severe Autism), and as working parents we have struggled to find the right fit for him as far as day activities. We are divorced (amicably) and live 80 miles apart, but manage to juggle a smooth weekly transition so my son spends equal time with us. A community that allows us to be in the same place would be awesome! Thank you for such inspiring thoughts and efforts.
Thanks so much for the kind words, Cheryl. Seems many of us have similar ideas about what an ideal living arrangement might look like. If you have any additional thoughts or hear about others who are working on this, please share with us. My best to you and yours! Lynn
We have 6.7 acres of land in Massachusetts. We have a friend who has a child with autism. Do you know how to get funding etc. so that way we could build something like this on the property? We want to have a pool with like farm animals. Assisted living type apartments for the adults autistics as they’re really doesn’t seem to be something like that. I have left my email. please respond if you have any idea how we can get started
I have a son who is 6 with ASD, and looking towards his future, I can’t help but run into these posts. I live in NH, originally from CT. I have a background in human services and and a licensed nursing assistant, with a phlebotomy certificate. I would be interested in helping with some grant proposals and researching for funding and possibly help with some fundraising for your idea. I am sure there are ways to get it going!
Oh wow, my fellow autism mom, friend, and I have talked about this kind of community for years, although we talked about islands or farms, but the same thought process. It sounds like heaven to me. I have two sons on the spectrum. My oldest (22)has aspergers, and my youngest, soon to be 20, is non-verbal autistic. Wouldn’t it be great to live somewhere where all the little nagging annoyances of the “typical” world were minimized. (Stares, worry of offending someone else, etc.) Everyone’s stress level would probably go down, ours and our kid’s. Wouldn’t it be great if there were jobs for our kids within our “bird’s of a feather” community, tailored to their skills and interests. All I can say right now is WOW, I love the idea.
I was dreaming about exactly the same kind of “village” for a while now.
I happen to see back in India, a very similar idea has been implemented and going on. They have a residential program with 1 on 1 care for kids with autism and services for kids – like speech, OT, etc. They also have a concept of guardian’s village adjacent to the residential community where the parents of kids with autism can live. The management of the residential program is over seen by the parent group from the guardian’s village. So if a parent passes on, the kid is still cared for by the residential program and overseen by parents.
Funding is mainly through parents – and substantially supported by donations and government aids. I loved the idea and not sure how practical is it to come up with something in US.
The idea of a “village” for families within the Autism community has been something I have been dreaming of for years now. I, like most of us it seems, am willing to move wherever I need to, to make this a reality. I imagine a “world” where we all understand the difficulties we all face, so there are no stares from people who don’t “get it”. How less stressed we would all be…I am a single mom, struggling to do it on my own every day and I am terrified of my son’s future. What will it look like? Who will be there for him? Why isn’t there a community like this for him to grow up in, tailored to HIS needs, rather than forcing him to live in a society that doesn’t work for him?? If we can actually make this happen…I’m all in! It takes a village to raise a child (especially with autism!)
I would love to help out any way I can! Please keep me in the loop .