January 5, 1999

First of all, a brief definition of co-housing:  Co-housing is a type of
collaborative housing that attempts to overcome the alienation of modern
subdivisions in which no-one knows their neighbors, and there is no sense of
community.  It's characterized by private homes, but also extensive common
facilities, such as a large dining room, kitchen, lounges, meeting rooms,
recreation facilities, library, workshops, childcare, etc.  Usually, cohousing
communities are designed and managed by the residents, and are intentional
neighborhoods: the people are consciously committed to living as a community;
the physical design itself encourages that and facilitates social contact.
The community featured on Dateline had the houses aligned in a circular
pattern (rather than rows) and were joined by lawns & sidewalks.  There were
no streets, therefore no cars, inside the circular area.  This made it a very
safe place for children to play and people to walk & move about.  It also
eliminated traffic noise.  It wasn't clear to me where people parked their
cars.  Presumably, there were streets & parking along the outer circular edge
of the property.  

With co-housing arrangements, generally, the founders of the community
incorporate to form an organization for the purpose of defining the objectives
of the community & membership requirements.  Anyone who wishes to live in the
community must first become a member of the organization and ascribe to the
principles outlined by the foundation.  In my hypothetical "autism community"
members would have to have some affiliation with autism (i.e., diagnosis or
family member w/autism).

Let's assume a group of families w/autistic kids and autistic spectrum adults
get together to form a co-housing community.  The one prerequiste to living in
the community would be some sort of affiliation with autism.  The goal of the
community would be to create a safe place for autistic spectrum people and/or
their families to live in an atmosphere of acceptance & security.  Such a
community could provide autistic people with a permanent residence to live
long, happy, meaningful lives surrounded by people who know them & have made a
committment to make the community their permanent residence as well.  In other
words, the community would not be run by a hired staff that changes over every
few months.  It would be run by autistic people themselves (to the extent they
are able) and family members.

As the parent of a 20 year old adult autistic male who is unable to live
independently, I'm concerned about his future & what will happen to him when
I'm gone.  The scenerio above could be an ideal solution.  It would provide
both of us with security and me with peace of mind to know there would be
caring & understanding people involved in his life long after I'm gone.  

Of course, this type of arrangement could give rise to petty differences among
neighbors and there would be tedious decision making tasks for the group &
meetings to attend, but for me personally, I think I could learn to accept
that if it meant that my son would have security & I wouldn't have to worry
about "where will he live?  how will he live?".  

Each member of the community lives in
their own home but also participates in regular community activities, such as
shared meals, babysitting co-ops, etc.  I can also imagine the opportunities
that could exist for home & community-based businesses and vocational
opportunities for the autistic adults within the community.  

anyone care to add any thoughts?  insights?

Carol

January 6, 1999

The co-housing community featured in Dateline had a building in the center of
the neighborhood that served as a meeting place & included a kitchen & large
dining room.  In my "hypothetical" community, I thought there could be a
similiar structure, like a Community Center,  that could be used not only for
shared meals but there could also be space provided where OT/PT/SLP's & others
could meet with autistic members of the community for therapy, etc.  A small
daycare or respite service could also be provided.  The ideas are endless...

Unfortunately, funds are not!  And many times families with a disabled family
member pay for services out of their own pocket that insurance won't cover &
the state won't provide.  So then, the issue of funding such a project becomes
a serious obstacle.  

What I have wondered about & some of us on the list have discussed, is the
prospect of forming a non-profit organization to fund such an endeavor.  I
don't mean that all of us who are spread out all over the country (or world!)
would actually form an organization, but interested parties could find like
minded people in their own cities or states to form one.  My only question is,
would the expenditure of tax deductable contributions be legal if they're used
to fund housing not just for autistic people, but also their family members?
I don't know what the guidelines are for non-profit organizations, so maybe
someone else on the list has some ideas.

As far as land is concerned, I've thought about the possibility of buying land
from a tax certificate sale.  It is possible, although difficult, to secure
property buy paying the back taxes that are owed on it through your County
Accessor's Office.

Anyway, it's something to think about...  Carol

January 8, 1999

Since my son has gotten bigger, I've found that household objects have to be
stronger. I really shy away from the materials that make up most new
housing--too weak. Hollow doors and dry wall just don't hold up, as I'm sure
many of you will agree.

I've been looking into, believe it or not, log cabins. A pine or cedar log
can take quite a lot of abuse. What I really like are the log cabins that
are designed to look like ordinary housing (flat inner walls, clapboard-like
exteriors, except instead of a clapboard, you're dealing with an 8-inch
thick log that only looks like a clapboard). And single storied, to avoid
accidents with stairs.

Interior window shutters, I think, are another possibly good idea. They can
not only look very nice, they can be very sturdy and secure. Plus, they
could add insulation and help cut energy costs on a cold or hot night. But
they basically would keep junior away from the glass at night, or the
plexiglass or safety glass.

"This-end-up" style of furniture is also a sturdy choice for a sturdy house.
Functional, and perhaps less likely to cause injury by coming apart too
easily (though I would add more rounded edges and a lot more padding in the
toughest fabric I could find--double layered denim seems to hold up better
than some other fabrics).

Anyway, first things first--need to look for land! Land that can hold maybe
20 or more houses on large, fenced-in lots (two acres each? one acre each?),
with lots of common space left over for community facilities (another 40
acres for a central care facility and park grounds?).
Autism Community Listmember

January 8, 1999
Your idea of one-acre tracts sounds very appealing, but for me personally, it
would defeat the purpose of living in an intentional community.  I want
neighbors close enough to me that they could maybe "keep an eye out" on things
if my son ever reaches the point where he can stay alone while I'm at work, or
even live alone after he gets older (highly unlikely).  Also, I need a place
that he might be able to maintain (to some degree) himself.

I've been thinking that a duplex could meet our needs in several ways.  If we
move into one before I retire, then my son & I could live in one half & a
live-in caregiver could live in the other half.  Or, after I retire, perhaps I
could live in one half of the duplex while my son lives in the other half.
Upon my demise, a caregiver or mentor could live in my half of the duplex
while overseeing my son's welfare.  Or if he is more independent by then,
perhaps half of  the duplex could be rented out to provide him with additional
income.  

One advantage I see to living in an intentional community where the homes &
community center are in close proximity to one another, is the fact that it
could help facilitate more independence in some of the autistic residents.
For example, if shared meals are available in the community center on a
regular basis, then perhaps my son could learn to walk there on his own to get
something to eat when necessary.  If vocational programs are available at the
community center, then (in theory at least) he could also learn to walk there
safely.  If the community is gated with an attendant or security guard, then
non-residents would have limited access to the community and autistic
residents would be less likely to wander out of the community, and yet they
would be able to move about safely within the property.

I can see where an intentional community could incorporate a variety of living
arrangements - small acreages, single family residences, multi-family
residences, duplexes, small individual cottages, small apartment unit, etc.
Carol

January 9, 1999

Hi. I used to feel the same way about making accomodations for a caregiver.
Was even going to buy a house that was a mother-daughter arrangement. I
worried about tying my son's welfare to a single person, though.

It basically comes down to: can I rely on one person to always be there?

I could only hope that I could, but I don't see how I can guarantee it.

So, what I hoped to gain from a community is an organization that would
outlast the founding members--a semi-institution of sorts that would
guarantee services, and that would also have checks in place to prevent
abuse or mismanagement, from a combination of family oversight and
professional trustees (what do you think about a bank trust department being
used for the financial management?).

I also hoped to gain proximity to neighbors who share and so understand the
problem, so that there would be less friction over the so-called "odd"
behaviors we have to live with. And of course mutual support could develop
in many ways between families, but I really worry about how much I can rely
on it 20 years from now. Neighbors, even family members, can move away or
pass on, the same way any caregiver can quit after a few years. But the
organization can be designed to outlast any of that.

And community layout could be varied to fill different needs, with some
houses close together, like townhouses, and others spaced farther apart, yet
all revolving around a single purpose, and a single community.

I have to admit I realize the drawbacks of relying on a core of
professionals and volunteers. That's why I've been trying to recruit the
assistance of some religious organizations that subscribe to altruistic
goals. 

There's an example of a religious organization that is devoted to helping
the developmentally disabled, and the sick and homeless, as well: Baker
Victory Services, part of Our Lady of Victory Homes of Charity (handicapped
preschool programs, vocational programs, group homes, respite care, etc.).
They're located in Lackawanna, NY. Been around for, I believe, about 140
years. They've developed into a system of group homes, a hospital and
clinics. They don't rely, however, on a planned community of a network of
families with similar interests. Still, they may be a model as far as
developing a core group of professional and volunteer caregivers goes. They
may even be willing to establish some group homes *within* a planned
shared-interest community.

I know the religious aspect turns a lot of people off--some communities will
be for it, and some against it. It's part of the shared values and goals
aspect, I guess.
Autism Community Listmember

January 9, 1999
I agree with everything you said about "community".  The fact that you cannot
depend on one person to always be there, whether it's family or a paid staff,
makes community a necessity (in my opinion).  When I was talking about
duplexes & having a caregiver live in one half, I realize that someone would
have to be responsible for hiring the caregiver (upon my demise) and that's
where the close knit community concept comes in.  As you said, some type of
organization would have to be in place that would outlast the founding
members, etc. and would continue to oversee the welfare of the autistic
residents, as well as the approval or rejection of potential residents of the
community.  As unpleasant as the word "rejection" may sound, some type of
"governing body" would have to make those decisions on an ongoing basis.  It's
inevitable that over time some people might decide to move out of the
community & some sort of process for allowing others to move in would have to
be in place.  Another issue here would be - how would a family sell their
property in the event they want to move?  It couldn't be put up on the market
like any other piece of real estate.  Perhaps, the "foundation" could buy it
back.  I know that other communities have dealt with these issues (and in
terminology that's beyond the extent of my vocabulary!), but I haven't had
time to research it.

I do think the nature of the community concept & the motivation for becoming
involved in such a lifestyle would make moving out of the community just an
occassional occurence.  Members of the community would be making a level of
committment when they join that would be unlike the type of "committment" one
normally makes when you move from one neighborhood to another or from one city to another.
Carol

January 9, 1999

I also dealt with a religious group in New Hampshire similar to "L'Arche" -
has anyone heard of them?  

It occurred to me years ago that some religious groups might be involved
without being so intensely religion-oriented that non-religious might not want
to be involved.  What comes to mind are the Quakers and Unitarians, both of
which are very commited to non-violence (so I assume might be less likely to
abuse our children!)....

This covers a couple of housing ideas:

1.  General - In terms of independent housing with communal living spaces, I
tend to think along the lines that Carol does - hoping to be closer than on
separate acres.  (I come from the city, so smaller spaces are comfortable.)
Isolation has been too much of a problem for many families on their own, and
there are arguable benefits to greater proximity (at least for some of us).

2.  Log Cabins - I think they have a reputation for being very well-insulated.
Earth-bermed houses are the same, but it's much harder to find a capable
contractor to build those.  Under #3, I mentioned possible advantages of a log
cabin in terms of allergy and noise control.

3.  Adaptations - 

	(a) Inside shutters are a good idea.  So is very thick plexiglass, which I
found useful in a large room with many windows & a lot of acting-out behavior
by my son.  Plexi can still be used in windows which can be opened, so the
issue of adequate ventilation can be handled that way.  

	(b) "This End Up" furniture is very sturdy.  I also agree with the idea of
rounded edges - extremely important, i know from experience.  Possible
cushions:  solid foam (not shredded or bits) encased in soft but sturdy vinyl.
Try covers (with super-velcro or zippered closures) made of washable material
like cotton duck.  They would be replaceable at less cost, too.

	(c) You can have built-ins for things that might become dangers if tipped or
thrown:  banquet seating with anchored benches or chairs, for instance.
Couches built in (to a wall/window alcove, for instance) could have storage
underneath or at the sides, which could also be locked if necessary, to store
things you'd need in that area but might want out of the way in a difficult
situation.

4.  Allergy Environment:  Definitely this this could be very valuable ... and
i think a log cabin might actually be more applicable in this category.  (It
might also filter outside noise better - don't know for sure.)  Money
permitting, would like to see centralized air conditioning, air filters, and a
central vacuum unit, with the motors in a sound-proof room elsewhere (like the
basement).  It can be hard to tell when someone who is non-verbal is having
trouble with the air or with substances in the house.  

5.  Layout - I tend to think that keeping the residential section on one floor
would be safest.  (I hadn't thought of having the family members or caretakers
on the second - good idea, unless the parents are aging out & too crickety for
stairs!)

	(a)  I had originally envisioned a small group home (of which several could
be built on a single large lot if several families were involved) in a
picture-frame configuration.  One side could be a small apartment for the
parents.  Depending on the size of that apt & the building, another side could
be garage & storage, if necessary.  Another side could be the large "great
room" which would have the gathering room & cooking/dining facilities right
there - so if you are short-staffed, there would be plenty of room for
everyone and the caretakers who are there could supervise easily.  Bedrooms
could take up the other side(s).  My purpose for this style is that it would
create an enclosed garden area in the center, where people could go out and
enjoy it but still be safe.  A screened or enclosed porch could even be
included on the exterior of the great-room side.  This was what I envisioned
on a small, independent scale but might be adaptable in multiple units for a
group of families.

	(b)  Another idea:  In terms of independent housing with communal living
space, I tend to think as Carol does that we might want to be closer to each
other in such a community.  (I am from the city, so smaller spaces are not a
problem for me!)  It would all depend on funding, of course.  I saw a brochure
on a retirement home where the persons had small individual apartments with
kitchen facilities included.  The first floor had communal rooms, including a
kitchen & dining room in case the residents did not feeling like cooking or
eating alone.  What struck me was an underground tunnel leading directly to
the hospital system which built the house.  (It was part of an Episcopal
hospital system.)  What about having a central communal space linked by
walkways to small independent homes/cottages that would fan out like a web?
The individual families might choose how long those connecting walkways would
be (and whether they should be covered in some climates, etc.)....Just a
thought.

6.  Funding - I have no familiarity with grant-writing.  Is it possible that
affiliation with some religious or social group might create a funding stream?
Right now, a lot of disabilities agencies also build and run group homes.  We
families might do that hands-on work if an agency assists with the funding.

7.  Staffing - I am also concerned about a 1:1 caregiver - they are hard to
find, and you do deal with various issues including your child's dependence on
that person.  The truth is that neighbors, friends, and employees (especially
in this field) do move on.  I hope to decrease the frequency of these losses,
and I would think a larger (and more varied?) network might help decrease the
effect of each individual's absence.  In this field, it seems that the hands-
on people (aides, for example) are at the low-end of the prestige "totem pole"
- usually less educated, lowest paid, etc.  There is also more contact and
more possibility for abuse, so I wondered about the religious groups and
community volunteers.  ("L'Arche" does this also.)   Another note:  more staff
(paid or volunteer, family or whatever) should decrease the stress involved in
caregiving and therefore the possibility of abuse.

I strongly agree about the value of community in the long-term care and
protection of the autistic members.  As a single parent, I have always been
very aware that someone else would have to make decisions for my child.  Even
couples with children may have to face this problem eventually.  

One possibility would be a regular group meeting of all residents (if not a
governing body, which might lead to the types of agencies we've had trouble
with!) ... to discuss issues, policies, problems, etc.  It would have to
include policies on new members, and departing members (which I would
certainly hope would be rare).  There could be some provision for when family
members die - either the parents (etc.) or the autistic person.  That would
have to be worked out when the group is formed, by consensus.  There are
various legal options available, but I am not a lawyer.  In Mitchell-Lama
subsidized housing, you have to sell back to the corporation when you leave.
In other co-operative communities, the corporation has to approve the sale -
and they get a portion of any profits.  All could be considered - and are
legally 'in place' for other types of communities.

Difficult as it is to be said, 'rejection' has to be considered.  In such an
arrangement, we have an obligation to ourselves, our children, and our mutual
community to make sound decisions about participants.  We even have an
obligation to potential members - not everyone would be happy joining a
communal environment, or the particular one in which our families live.  

I have also given though to dealing with problems among members.  One agency
where my son attended day treatment also ran group homes.  A parent whose
daughter just entered a group home placement of theirs was concerned because
her daughter was a non-smoker and the assigned roommate was a chain smoker.
This type of consideration is a quality-of-life issue for our members even if
we all have independent houses.  In that case, the agency essentially told her
to be happy her daughter had a placement - an attitude none of use would want
applied to ourselves if we were looking for a place to live!

One related issue is behaviors - how to handle difficult or dangerous
behaviors.  I have been interested in the "gentle teaching" principles and
various places which use similar techniques.  Communities would need to know
how to handle such problems and have some consensus on techniques.  We would
want to have caregivers with the best understanding and training - and
hopefully could afford to - so these issues would be workable without the kind
of difficulties that we have seen in dealing with agencies.

Sue

© Copyright 1998, Raynmom@geocities.com - Please read copyright notice
Autism-Community@usa.net
http://geocities.datacellar.net/~raynmom/