"The independence Road " Project
With medical developments, new research and increased knowledge of the disease, the life span of t FD patients has lengthened significantly. This welcome development has brought with it the necessity to deal with new and different issues. The struggles with the complicated daily care regime, frequent hospitalizations, para-medical treatments and difficult physical challenges create emotional and physical stress for the patients and their families.
The disease harms the patient not only physically but also their ability to maintain a stable working environment at school and in the community at large. It is difficult for the adult patients to find an appropriate framework, because of the worsening of the disease, the frequencies of the attacks, the subsequent hospitalizations and their mental and emotional state.
In Israel today, there are 112 patients of which two thirds are over the age of 18. This fact has led to the development of the project for independence and employment, called " The independence Road." It will lead to improved self-esteem, it will provide a social framework and will impart skills to guide them with their daily routine.
FD does not interfere with the cognitive development of its patients. They are highly motivated to continue to grow and to realize their full potential as individuals and as a group. However, only a few of the adult patients of FD have found employment and independent housing in today's local conditions. 90% of the adults live at home without any social and work opportunities. This fact is directly related to their need for medical supervision 24/7, the availability of appropriate paramedical treatments, frequent stays in the hospital, the instability of the disease itself, and attention and concentration difficulties. Moreover, some patients are more challenged cognitively and the instability of their blood pressure requires them to work at a slower pace than others.
Goals of the " The independence Road " Project:
- To strengthen their individual and group development.
- Development of life and social skills
- Imparting of knowledge necessary for independent living
- Adult supervision and the building of an individual plan for fulfilling the potential ofr each specific patient
Included in the project:
- 20 psychodrama sessions for the support group a year
- 5 social gatherings and/or enrichment activities a year
- Three day long overnight seminars where the patients are provided with: empowerment sessions for the adolescent and adult patients, lectures/ talks on what is needed for independent living, rehabilitation sessions, individual support, one medical lecture, five trips/activities with an emphasis on empowerment, self-awareness and fun, a parent child meeting and one seminar for the parents on empowerment and independence.