The LEGA del FILO d’ORO and its FAMILIES shared paths JOBS – Copenaghen, September 2012

The ‘Lega del Filo d'Oro’ ONLUS (non-profit social organization) always involves parents in the educational process and rehabilitation, it helps parents but does not replace them

from 19.4% to 52.7%: motor problems Disability is present in three domains: neuromotor, sensory, cognitive-linguistic

PRACTICAL TASKS LOW SELF-SUFFICIENCY HEALTH PROBLEMS FAMILIES WITH INCREASING SOLITUDE DIFFICULT EDUCATION INFORMATION NEEDS

Is involved Is informed Takes part The family is directly involved in the progress and problems of the educational process and rehabilitation We inform / encourage the family to acquire more knowledge and the tools to intervene in the process of development of their children The family participates, shares and proposes (co- author) the educational and rehabilitation choises aimed at offering their child a better quality of life The family

Adult children Family separation Absence of a family component Different nationalities Acquired multisensory impairments Severe disability

Analyze and assess the needs of families: adapt, change and improve the services offered, adjusting to the new and different demands SEARCHING - INTERVENTION Project The Family in the process of rehabilitation

The family, with its strengths and weaknesses, is an important resource

DYNAMICS BETWEEN MOTHER AND FATHER Parents who have had a good activation using the resources they have available, show solidarity with each other Parents who slip into passivity, do not argue with the couple, they tend to deny aspects of reality, to become hypercritical

COMMON CHARACTERISTICS OF PARENTS Need to see beyond the disability Doubts about his parental competence Difficulty in developing a relationship Difficulty in identifying the most suitable path for their child

The child loses in the family’s eyes a part of their individuality Parents need to know how to engage other children in a relationship on a par with the disabled child Parents need to have strategies to support the maintenance of roles and family relations They need to reinvent their marriage starting from new bases

Risk of isolation: the friendships, social relations of the couple often suffer a transformation Decrease, lack of leisure time, moments of leisure and relaxation

Support provided by grandparents and other relatives If there is a parental support is important that to stabilize and preserve relationships with other figures as neighbors, operators, volunteers,

* everyday life without having to reduce the time spent with the other children, * relations with the outside world, * keeping on working (eg avoiding voluntary resignation by the mother)

the intervention with family consists > helping the members to understand the causes of their child disease > informing and training them about the educational intervention > offering them a 'counseling' and psychological support

 ACTIVITIES PERFORMED - Individual interviews with the psychologist  - Counselling  - Parent-training  - Group meetings theme  - Groups working with the body and movement  - Group meetings with the brothers  - Contact families

So that family members can: Talking about their "feelings" Be helped to involve other children in a report on a par with the disabled child Be helped to deal with the frustrations due to their inability to meet the needs of the child Having strategies to support the maintenance of roles and family relations

Seminars and conferences Ph doctors /pediatricians lawyers social worker psychologists

Committee of family members: <> periodic meetings <> frequent exchange opinions <> training objective <> expression of need etc..

The family is now recognized as an essential co-worker, along with technical educational and rehabilitation path of the child To get the cooperation of the family is important that you establish with it a relationship of confidence, which involves listening and understanding, and absolutely non-judgmental

Welcome parents to LFDO 1.Initial interview 2.Further discussion of return 3.Compilation of the 'family card'

1.Initial interview During the meetings, regularly with the family, we collect their needs, problems and expectations with their children They are informed about the aims and some of the issues that is considered appropriate for them to share, trying to bring out the real potential of the child and enhancing parenting skills Requests for solutions to the problems described

2. Further discussion of return Information to parents on the path taken agreements for possible inclusion in the direct management of the parent of the child

Parental involvement is expressed essentially in two stages 1) At first they are asked to observe in the classroom educational activities of the child and the operator 2) A second phase where their involvement is direct

3. Compilation of the ‘family card’ interviews and work with families done by any professional (psychologist and / or teacher, ass. social and SCI. clinical) are synthetically transcribed in a Family Card

Family members ask: > to have a successful relationship between the institution and the family, based on clear information, availability to listen and help, a good reception / hospitality > to observe directly the educational and rehabilitative interventions, to acquire the educational skills

> to have meetings with the team at the time of programming education plan and rehabilitation and to check the progress of the life project > to have the necessary documentation (reports of the various professionals) to continue at home and / or at the territorial structures individualized rehabilitation program (set and approved by the Rehabilitation Centre)

> easy to enjoy the support of specialists to learn about and better understand the disability (frequent contacts) > to have talks with the psychologist to focus on the experiences and family dynamics within the family and from the event disabilities

> to participate in meetings between parents conducted by psychologist; meetings between parents (mutual aid); meetings between brothers and sisters > to have time for them and the other children, such as weekends and holidays-vacation relief for the disabled family member

A functional synergy between departments, professionals, facilities, etc.. allows not only to the deafblind and multisensory impaired persons, but also to the family to improve their quality of life and aim for higher and higher goals.