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We would like to share our experience in our program of Ambulatory Attention for Multihandicapped children. This program is focused on children with visual limitation together with other disabilities, who find themselves in their homes without any kind of educational or rehabilitative services available to them.
CORPALIV is a federally-recognized, private, non-profit Corporation, formed by a group of parents of children affected by visual impairment or blindness. We have been functioning officially since Feb. 1995, and it all started 5 years ago.
We formally started this program in March of 1996, with the help, motivation and support of the Christian Blind Mission, having the goal of reaching children and their families who found themselves without educational or rehabilitative services available to them via the existing Special Educational system.
In general terms, we will refer to our objectives, activities, methods, financial resources, and the impact on the nuclear family. As well, we will refer to the difficulties and advantages inherent to this type of service.
Objectives:
- To develop a personalized individual program that facilitates an increasingly independent lifestyle, maximizing full integration into the nuclear family and their surrounding social setting.
- To integrate the parents into the educational process of their handicapped child.
Initial Strategy:
The active participation
of the nuclear family as co-therapists makes it necessary to:
- Analyze working relationships
between parents and professionals.
- Draw near to and orient
parents.
- Prepare the educators
in strategies of working within the home environment.
- Promote awareness and
involvement in the immediate neighbourhood.
Localization of the recipients:
We found the families we
are currently involved with through the following:
- Taking a survey of Special
Education schools in Santiago.
- Reviewing the records
of members of CORPALIV.
We found 98 children between
the ages of 4 and 15 years, who are visually impaired together with at
least one other handicap, in their homes, without any type of attention.
We reached them via:
- Telephone contact
- Visits to the home
Enrolment of the recipients of the program:
The process of enrolment
is carried out via a signed agreement between CORPALIV and the parents.
This aspect has high value for them in that often we hear from this group
of people that "My child NEVER has had the opportunity to go to a school
" and has the end result of the parents being committed to the program
and being highly motivated. As well, we utilize a formal process of obtaining
information regarding the child himself and of his family, by the following:
- An individual written
record.
- A personal visit to the
home.
Diagnostic Evaluation:
We carefully follow the following
steps:
- Revision of medical and
clinical records.
- A period of observation,
important in order to understand family dynamics, the interaction between
the child and his family, and the type of space the child has within the
family.
- A period of application
of conclusions of the functional evaluation.
It is important to underscore that the family has a prominent role in this process, as they know their child better than anyone else.
Individualized Educational Plan (I.E.P.)
The Individualized Education Plan is designed in accord with the level of functioning of the child, priority being given to the child's development and expectations of the parents, along with the real needs of the nuclear family.
The mode of attention (in the home, CORPALIV's centre, the school if integration has been acheived) and the frequency of attention,(weekly, biweekly, monthly) are determined by the factors indicated above as well as the geographic dispersion within Santiago.
Carrying out the I.E.P. implies:
- Coordinate with the parents
to ensure that one of them, or other member of their family is present
in order to guarantee the reinforcement of the activates given in the context
of the entire family.
- Coordinate our initiatives
with other professionals involved with the child.
- Provide coaching to the
school where the child has been integrated.
- Involvement with the immediate
neighbourhood and social context of the family.
Direct Involvement with the Family:
The active participation
of the nuclear family as co-therapists led us to focus on various aspects
such as
the needs of the families,
the impact that the handicap has had on the heart of the family, the resources
available, and the support that they have received.
Often the family is wounded and disorientated. We invade the privacy of their home and must be willing to share their achievements, sorrows, and joys. In some cases it is necessary to provide a previous visit by a "visiting parent" with the goal of drawing near to them and orienting them to services available.
The parents are invited to participate in our Workshop for Parents, carried out by trained parent-members of CORPALIV. In this context the new parent has the possibility of sharing with others who have lived through similar experiences. This participation leads them to the conclusion that they are not alone, that their problem is not unique, that other parents are there that they can share with, and from whom can receive support. This facilitates the parent in coming to grips with the handicap of their child and ultimately they themselves can become agents of similar changes in the lives of other parents in corresponding situations.
Collaborative relationships between parents and professionals.
The establishment of a bond with families is not always easy for the "itinerant professional" and how to enter into this relationship requires that they first be prepared with respect to different points of view, various lifestyles, dissimilar ways of thinking, and new ways of relating. The first visits to a family are the most important in order to establish an adequate working relationship. We are invading the privacy of the home and we must be prepared to share their achievements, sorrows, and joys.
Various essential strategies such as: believe in the child and what he is achieving, trust in the parents, coordinate with other professionals attending the child, and fix routines that give rise to anticipation, all combine to give good results.
At present our universe of attention is 25 children, with many more on our waiting list. 90% are blind and 100% have at least one or more additional handicaps.
Even though this type of attention has important benefits such as: individualized attention, direct family involvement, working in the environment in which the child lives, the possibility of community education and involvement, it is important to note that it still is not the best for the child's needs in terms of the amount of time needed for their optimal development, the impossibility of sharing with peers, and the physical risk to the professional in their travel.
In closing, I wish to highlight the important support of the Christian Blind Mission, for their financing of our teachers, and the training of our teachers by Hilton Perkins Foundation.
After one year of operation,
I must underscore that, even though the frequency of attention (weekly,
biweekly, or monthly) is not ideal for the deep needs of these children,
some have NEVER had the possibility of individual attention or experienced
the commitment of their families of being involved in the educational process
of their child. This has given rise to the achievement of substantial advances
by these children as well as important improvements in their quality of
life. This experience has reinforced the bonds of collaboration between
parents and professionals and has opened up new opportunities for integration.