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Please Share your thoughts, feelings, and experiences with us and
others. Email us at jgiddan@meduohio.edu
We would like to know what others think about this issue:
COMMENT
As a parent of
a teenage boy with autism, I am beginning to look at the options
for my son's adult years. I think that the farmstead model may
be a good fit for my son because it offers the opportunity for
a mix of inclusion in the larger community and seclusion from
it in a supportive environment with meaningful activities and
social relationships.
As
he will be coming of age when the surge in numbers of individuals
with autism reaching adulthood will be starting, I am thinking
that I may well need to be prepared to create a farmstead situation
as opposed to finding one. I would appreciate any information
that readers may provide about how to go about creating a farmstead
community. What are the steps? What are the skills/knowledge needed?
What are potential road blocks and pitfalls? What, if any, are
the bureaucratic stumbling blocks? What are the critical things
to focus the most attention on?
I am concerned that the popular trend seems to be to create individual
supported living situations in urban settings. In trying to imagine
my son in this situation, it looks like it has a lot of potential
to become a very isolated and unstable living situation. How have
people involved in developing farmsteads dealt with, what seems
to be, the political and perhaps bureaucratic pressure to promote
these types of living situations and not more intentional communities?
Thanks for any responses.
Sincerely,
Debbie Wechsler
The
history of the italian foundation "Genitori per l'Autismo"
("Parents for Autism") began in 1998, when five families
started what now is a farmstead: Cascina Rossago. In Italy a Foundation
is the best instrument to grant that a capital is used for the issue
decided. So, first they made a Foundation, and then bought 42 acres
of land.
After that, the Foundation made a project together with the University
of Pavia and received funds from private bank foundations, private
agencies and public funds by a special National Law for experimental
projects in favour of people with serious disabilities.
The actual "Cascina" (Farm) has been built all together,
as projected, for 24 residents, because in that way the foundation
could get funds. Last May (May 15th) the first two residents started
living in it. By now, resident are 7 autistic young men, age 18-30,
the latest enteredtwenty days ago. Staff is formed by 2 psichiatric
rehabilitors (which is a 3 years university degree) one psychologist
and four socio-welfare helpers (ASA).
Trainees from psychiatric rehabilitation, education and psychology
from the University of Pavia and other Universities came to work
in Cascina Rossago, so the number of the staff is high, which is
absolutely necesarry in this beginning phase. Staff supervision
is regularly provided so there are discussions about problems, behaviours
and programs. We are now studying new programs and ways to monitor
our guests.
It is a a great work but we already have important results as:
* a great decrease of problem behaviours
* increased participation in activities
* improvement in social behaviours
* general wellbeing and happiness
* 5 of 7 residents had epilteptic seizures (and
take antiepileptic
drugs, and one of them had frequent seizures, one every 20 days).
Since they have been here the only one who had one seizure was that
boy (the seizure was ten day after admission, in June)
The
history of the italian foundation "Genitori per l'Autismo"
("Parents for Autism") began in 1998, when five families
started what now is a farmstead: Cascina Rossago. In Italy a Foundation
is the best instrument to grant that a capital is used for the
issue decided.
So, first they made a Foundation, and then bought 42 acres of
land. After that, the Foundation made a project together with
the University of Pavia and received funds from private bank foundations,
private agencies and public funds by a special National Law for
experimental projects in favour of people with serious disabilities.
The actual "Cascina" (Farm) has been built all together,
as projected, for 24 residents, because in that way the foundation
could get funds. Last May (May 15th) the first two residents started
living in it. By now, resident are 7 autistic young men, age 18-30,
the latest entered twenty days ago. Staff is formed by 2 psichiatric
rehabilitors (which is a 3 years university degree) one psychologist
and four socio-welfare helpers (ASA).
Trainees from psychiatric rehabilitation, education and psychology
from the University of Pavia and other Universities came to work
in Cascina Rossago, so the number of the staff is high, which
is absolutely necesarry in this beginning phase. Staff supervision
is regularly provided so there are discussions about problems,
behaviours and programs.
We are now studying new programs and ways to monitor our guests.
It is a a great work but we already have important results as:
* a great decrease of problem behaviours
* increased participation in activities
* improvement in social behaviours
* general wellbeing and happiness
* 5 of 7 residents had epilteptic seizures (and take antiepileptic
drugs, and one of them had frequent seizures, one every 20 days).
Since they have been here the only one who had one seizure was
that boy (the seizure was ten day after admission, in June)
Stefania Ucelli
Director
Cascina Rossago
e-mail cascinarossago@tin.it
Response(s):
My
wife Lorraine and I have decided to turn our lives to fostering
a farm residence for adults with Autism. Our son, age 21, is autistic
and loves the peace and quiet of the country and animals, particularly
horses and dogs. We have found a property and made an offer -
not yet accepted - for 6 acres with a large house big enough for
us and up to 6 residents with two in each large bedrooms (17 x
17). We have never seen so much paperwork to get a 501 c3 status
and to get approved by the state (FL).
If anyone has words of encouragement, guidance and suggestions
we would be greatful.
Many thanks in advance,
Bob Turner
Debbie,
When I started reading your letter, I thought it was something
I had written that was being sent back to me. Your thoughts certainly
reflect my own. When my son was 16 I figured it might take 5 years
to get a farmstead up and running so I began working on it then.
It's been over 3 years and it looks like we'll be opening our
doors early in 2003.
We began by forming a nonprofit corporation and getting 501(c)3
status. Then we began fundraising and grant writing. We found
little success with grantwriting as most foundations don't like
to give to start-ups, particularly ones that will require so much
capital to get started. We were fortunate to have one substantial
donation that gave us the momentum to get moving forward. We are
hopeful that once we've begun providing services, grantwriting
will be more successful. (I've wondered if it might have been
easier to form a for profit corporation and get investors.)
We are in New Hampshire where there is a very vocal and politically
strong contingency that is against separate facilities for people
with disabilities. However, NH is also supportive of "self-determination"
so we simply remind those who are philosophically opposed to what
we are doing that it is the "consumer" and his/her parents,
not the "professionals" in the field, who get to make
the decision about what is best for that individual. Thus, if
someone determines that our farmstead is a better fit for their
needs than individual supported living/employment in the greater
community, they have the right to make that choice. In the end,
I believe that these "consumers" and their parents will
simply insist that they be given the opportunity to use the services
we will soon be providing. We've had a lot of support from parents.
Hope this helps.
Good Luck.
The
foundation Genitori per l'Autismo (Parents for Autism) is going
to start a residential program for autistic adults in the Spring
2002: a farm, a place to live and work together. The question
that people ask us is whether that kind of project can be too
"closed" and too "protected". Being "closed" they say, could limit
integration into the larger community, and being "protected,"
could limit its scope as a rehabilitative project.
My
own thoughts are that this could be the best context for rehabilitation,
based on communication and work in a group of pairs, and it can
also maximize integration of adults with Autism in exchanges with
small villages and the country-side.
About
this topic, we have found different points of view about rehabilitation:
the "ideological" and the "pragmatic" one. In my opinion, the
farm context is the most suitable for many adults with Autism
because it gives importance to the technical sides of habilitation,
but also attention to quality of life in a natural setting.
-Stefania
Ucelli
Many residents at Somerset Court like open space, they like the
freedom to run on impulse; some like to be always on the go and
appear happiest when they are doing meaningful physical tasks
and are calmer after a lot of exercise.
Others
who have little understanding of danger learn where the parameters
are of our site and then have a great deal of independence around
the 26 acres and different buildings. Being free from the intrusion,
as they see it, of one to one support from a staff member, who
if they were in a town would be always by their side.
The
residents co-exist with many other adults on the site, both staff
and residents, passing others in a similar way to how I do when
I visit London for meetings and feel alone in a crowd of people,
where the British rules for commuters is not to have any interaction
with each other.
A
key feature for success is that internal space should not be overcrowded;
living groups of 4-8 people we have found work. We are trying
to extend the accommodation to include a choice of communal sitting
rooms, so residents can exercise more choice over who they do
and don't spend their leisure time with. Those who enjoy people
watching from the periphery can then do so, while others can seek
solitude without retreating to their bedrooms.
Another
need is a good transport fleet, to ensure inclusion in community
activities can take place on a regular bases, when adequate staff
support is necessary. As we move further towards a car dependent
culture, arriving everywhere in a vehicle is a norm.
Somerset
Court would not be right for those who could independently walk
to the shops or to work or a leisure centre, it would decrease
their skills. We are always honest enough to acknowledge when
a residents skills have improved to the point where the restrictions
on community access out way the advantages of a rural community.
-Andrew
Duckworth
Those in our business who react to the notion of a rural model often
confuse bricks-and-mortar issues with program practice. It is sometimes
hard to look beyond the building to visualize quality. An attractive
farm or an attractive urban apartment does not automatically result
in positive life experiences. It is our responsibility as service
providers to effectively address the needs of those who come to
us for care and support. If we live in the country, we must try
hard to access the community for social opportunities. Living in
an urban setting can create challenges of privacy, safety, and security.
There are different challenges in each of the settings that Bittersweet
Farms operates (the main farm home, the smaller group home, and
community-based supported living homes).
The farm, unlike other settings, offers meaningful vocational and
recreational opportunities that are much more difficult to include
in typical urban and suburban neighborhoods. If someone needs some
space, they can walk outside, play horseshoes, visit and feed the
animals, check the sizes of the growing pumpkins, empty the sap
from a maple tree, pick some strawberries, etc. Many of these same
activities can be performed in any setting, urban or rural, however,
in the farm setting staff find it natural to engage in these things
spontaneously and without it being prescribed by a team process.
Residential service providers need to be more holistic in their
approach. We need to put the dynamic social experience of the urban
community as well as the healthy physical environment of the country
into the daily lives of all served. Looking at a program by studying
its spot on the map is short-sighted. Good luck in your Spring opening.
-Charles R. Flowers, Executive Director, Bittersweet Farms
The
"isolation" of those with autism, when placed in rural
settings, is a criticism of those with what I call an "urban
bias." Indeed, much of America continues to be rural, and
small family sized farms still endure, even during this time of
agricultural conglomerates. In fact, many people leave cities
for the tranquility and natural pleasure of the country.
Adults
with autism who live in rural farmstead communities can lead richly
varied lives, socializing with staff members, visiting local towns
for shopping, banking, haircuts, restaurants, festivals and entertainment,
just as they can invite family, friends and neighbors to the community
for celebrations of all kinds.
Interestingly,
the suburbs continue to creep westward toward Bittersweet Farms
in the USA, so what appeared rural sixteen years ago, now is indeed
suburban!
City
life with noise, neighbors in close proximity, unpredictability
of traffic and transportation is not the best choice for all with
autism. A spectrum of options makes the most sense.
-Jane
J. Giddan
Submit
a question or response to jgiddan@meduohio.edu
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