3.1 Training and involving families in the rehabilitation process

Rehabilitation of people with disabilities is a process aimed at enabling them to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Rehabilitation provides disabled people with the tools they need to attain independence and self-determination.

The basic objective of rehabilitation is to restore the physical, social and psychological restore the physical, social and psychological potential to a level, so that he can independently function and carry on

·        an independent life

·        prevent disability and return to normalcy

·        maximum level of restoration through different interventions

·        training in vocational methods to suit working with residual disability and earn a living

Rehabilitation approaches :

·        Community based

·        Institution based

·        Outreach programmes

·        Welfare measures

Need of family for rehabilitation of individual                                   

Untill recently, professionals in the rehabilitation field took a primarily client centered approach with the focus on the individual's handicap. There is now a realization among specialists that these individuals cannot be viewed as isolated entities. They need to be seen within their familial and societal contexts because of the reciprocal and interdependent relationships between such individuals and their families, and the influence that the family exerts on their overall development. Since the family can play a vital role in supporting such a member, its direct involvement in the rehabilitation process as an active partner in the multidisciplinary team is increasingly considered necessary. Moreover, it has been accepted that the overall goals of rehabilitation are the attainment of integration and equalization of opportunities by them in every facet of daily life, including a share in the normal social life of the family and the community

Factors influencing the condition of the family after the child’s disability occurrence

·     Quality of the family relations before the disability appears especially Quality of the relations between both parents.

·     A disabled child : type and severity of the disability , age at which the disability appears in , progress or lack of progress in the development and rehabilitation of a child

·     Financial and social status of the family

·     Parents educational level and their  previous contact with disability

·     Presence of other children in the family

·     Response of the extended family , friends , neighbours and other people to the disability of the child

·     Direct immediate support from the professionals and from the local community (early intervention) after disability occurs

Support for the family with a disabled child includes :

·        Psychological support and if necessary psychotherapy and psychiatric intervention

·        Raising of knowledge and competence of parents in different forms like breifing , teaching , workshop , seminars etc

·        Toy and book library , rehabilitation equipment and aids rental

·        Long and short term respite care

·        Social help and aid

·        Information , counselling , guidance services

·        Transport

·        Mutual support groups for the family with the similar problems

The designers and providers of human services affect the daily experience and the future prospects of the people , families and communities who rely on them.

·        Their policies and daily practice influence

·        where a person who depends on services lives ,learns , work and plays

·        What activities fill the person’s daily life

·        Who the person gets to know and where the person belongs

·        The way the person and other understand who the person is

The forms of support for the families with a disabled member have to refer to all of the life’s spheres and have to enable the access to :

·        Health care, education, social benefits and housing

·        Special aids and rehabilitation equipments

·        Social rehabilitation and daily activity for those who cannot work

·        Vocational rehabilitation and training , employment and support in job placement

·        Advocacy , personal assistance and legal protection

·        Meaningful and active leisure time activities

·        Services in the community ,participation in culture , sports and recreation

·        Respite care

Family support – in the centre consist of

·        Assesment of the child and providing parents with comprehensive information about therapeutical and educational program of their child

·        Parents club – support group for the parents run by psychologists

·        Consultations with specialists

·        Information exchange between staff of the centre and parents on the daily basis

·        Medical consultation in the center

·        Assistant for the parents in accordance to help them with formal procedures connected with disablity of their child

·        Fitting up the rehabilitation equipment and special aids .

·        Organization of the leisure time activities

·        Organization of the financial and in kind support (clothes , wheelchair , furniture etc)

·        Integration of the family environment – ceremonies and events inside and outside the center

·        Special transport provision

Family support – home services :

·        Education and rehabilitation at home in case of the bad health condition

·        Respite care: casual and short programs at the family home

·        Personal assistance for the summer vacation trips and stays

·        Support for the parents during the participant’s hospitalization

·        Actions and interventions of social worker

3.2 Parent professional relationship

Effective partnership between professionals and families would depend upon

·        Patience, sympathy and openness on the part of the helpers to understand families perspective 

·        Doing away with the concept of withholding of information concerning a disabled person 

·        Discretion in discussion with family 

·        Involvement of parents in planning and decision making

For the parents to be true partners in rehabilitation,it is essential that the professionals accept that:

·        The parents have a right to be involved in the planning, as the child is their ultimate responsibility. 

·        That the home is the large canvas of the child's life as she spends the major part of her life there. 

·        That parents are aware of the problems of the child but not able to gauge the impact of disability.

·        Parents have a major contribution to make in the life of the child. 

·        Professional efforts would not yield full results without family involvement. 

·        Parents have a right to know the various range of services and options available to the child and the right to choose the most practical one. 
For the family to be successful in the rehabilitation process of the disabled person, it is essential that:

·        There is demystification about disability. The family does not get confused and bogged down by labels and jargons but are told about the impact of the disability and the abilities of the child. 

·        The family as a whole decides to put itsbest foot forward to learn, to experiment, with ideas and understand, accept and love the family member with a disability. 

·        The disability is accepted by one and all and it is acknowledged. 

·        The family is open to ideas from the professionals. 

·        That the family is made aware of rehabilitation methods and avenues open to the child. 

·        The family members are present in decision-making process. 

·        The family members faithfully adhere to their part in the rehabilitation of the child.

3.3 Formation of Parent Self-Help Group

The families have constant challenge of caring and supporting the intellectually challenged throughout the life.

We believe there is a need to empower, motivate and support parents, through our member organisations. Parents of PWIDs are often confronted with stigmatization and discrimination because of their children’s disability. By forming Parents Self- Help Groups (PSHGs), parents will have a platform to meet people with the same circumstances with whom they can exchange their experiences and emotions. Together parents can support each other as they learn how to cope with these difficulties and gather tools and knowledge that can be helpful in their lives and those of their children. Due to the stigmatisation attached to intellectual disability, many families find it difficult to talk openly about their situation and more importantly to access the range of services available. Inclusion encourages Member Organisations to work with the parents of PWIDs in their communities to form Parent Self-Help Groups which can serve as platforms to share experiences and to build knowledge about living with PWIDs.

Parents are the focus of PSHGs, not their children. Parents need to be strong to be able to take care of their children. When parents are empowered, it is then that their children have possibilities. A parent can only help a child when she herself is strong.

The PSHG is about parents of children with intellectual disabilities coming together to share experiences, difficulties, and successes. These parents should be drawn together by a common background, exclusion and isolation from their families and society as a result of their disabled children.

The Parents Self-help group will offer parents the opportunity to meet with other parents and to share their experiences, knowledge, strengths and hopes. Parent participants will support each other as they cope with the stigmatisation of their children and themselves by sharing experiences or by advocating and lobbying against this stigmatisation.

Characteristics of Parents Self-Help Groups

Common Background: Parents in this group have a similar problem; the difficulties they face managing their children’s disability, and the stigmatisation and exclusion not only of the parents themselves, but of their children with intellectually disability and their families, as well as friends and workers of institutions that provides any kind of support to their children.

A Need for Inclusion:  While parents may join initially out of a strong need for support and understanding, over time, participants will form real bonds of friendship and partnership as they face their problems of exclusion and stigmatization together.

Independence: Member organizations of Inclusion can facilitate and support the start-up of the PSHGs, however the end goal is for the independent functioning of these groups.

Co-operation and Mutual Support: PSHGs are based on the principles of sharing and working co-operatively, as well as the mutual support cultivated between parents of children with intellectual disabilities.

The focus of the Parents Self-Help Groups

As far as persons with intellectual disabilities are concerned, Parent Self-Help Groups would be the joining of parents, guardians and/or caregivers to form groups. The focus of these parent self-help groups is to share experiences, build strong relationships and to build mutual support networks, creating a platform for advocacy work, development of skills required to raise a child with intellectual disability, and meeting other needs that parents of PWIDs may identify.  

·        Provide mutual support to parents of PWIDs through the sharing of experiences i.e. stories, stresses, feelings, issues, and successes  

·        Decrease isolation felt by parents of PWIDS  

·        Learn about the various services that are available to persons with intellectual disability  

·        Provide practical help to parents, for example, ways of coping with the feelings of exclusion and stigmatization.

A lot of effort is required to set up a PSHG. This is primarily due to the fact that most parents with children with intellectual disability do not see the point in meeting with other parents of PWIDs.

3.4 Parent Associations

The Parent Association is the structure through which parents/guardians in a school can work together for the best possible education for their children.

 The Education Act, 1998 sets down the role of the parent association.

The Parent Association works with the principal, staff and the board of management to build effective partnership of home and school.

Educational research on the involvement of parents in schools shows that children achieve higher levels when parents and teachers work together.

The Parent Association can advise the principal and Board of Management on policy issues and incidents that may require a review of school policy, e.g. Bullying, Safety, Homework, Enrolment, Behaviour problems etc.

Parent Associations can suggest and/or organise extra-curricular activities.

The Parent Association is a support for parents in the school.

The Parent Association can invite speakers to address the parents on issues which are topical or relevant.

The Parent Association is not a forum for complaint against either an individual teacher or parent. The Complaints Procedure is the mechanism for this.

Partnership between the Parent Association and the Principal

The Principal has a central role in the school. S/he is responsible for the day to day management of the school and plays a key leadership role. The Principal is also likely to best know the needs of the school; s/he has responsibility for encouraging the involvement of parents of students in the school, in line with the Education Act, 1998.

It is imperative therefore that the Parent Association and Principal develop a good working relationship and develop a good system for communicating with each other.

When a system of communication has been planned it will be important to review it together from time to time to make sure that it is working for both parties.

Partnership between the Parent Association and the Pupils

Children must have a voice in matters which affect them and their views should be given due weight in accordance with their age and maturity, in line with the National Children’s Strategy 2000-2010. The Parent Association should actively encourage a culture and practice of giving information to pupils and involving them in decisions that affect them e.g. school code of behaviour, anti-bullying policy.

 At primary level some schools now have councils for their pupils which are an important mechanism for children to discuss and air their views. Primary school children may also have the opportunity to learn new skills from being members of such councils. Parents should support children in the setting up of pupil councils. Pupil councils give opportunities to parents and the rest of the school community to hear the voice of children in the school. For information on pupil councils and student councils contact the Office of the Minister for Children and Youth Affairs. The Parent Association, with the staff and Board of Management, need to plan together to give pupils real opportunities for involvement and need to involve the pupils themselves in this planning process.

The Parent Association should be a structure that actively supports parents to ensure the best interests of their children. Parents value opportunities to meet other parents and share experiences about bringing up children and helping them to learn.

The Parent Association will be stronger and will help networking if it fully represents all parents. Therefore efforts should be made to:

·        Produce materials using straightforward and simple language, that is, avoid abbreviations and the use of jargon and make all communication respectful, unambiguous and clear

·        Choose times for meetings that will suit the majority of parents

·        Ensure where possible that Parent Association meetings are always held in accessible locations

·        Specifically reach out to under-represented parents of children in the school, for example parents from the Traveller and migrant communities, and invite them to become involved with the Parent Association committee.

3.5 Empowering Families

In Empowering Families, community-based prevention services are provided to strengthen the protective factors, or positive qualities in families.  The services develop skills, personal characteristics, knowledge, relationships, and opportunities to help individuals and families deal with challenges and difficulties experienced in school, work, and life.

Empowering families strengthens families by giving them a voice and a choice.  Strengths-based services are centered around the needs of each individual family.  Focusing on the positive qualities every family has, the program supports the family as they identify and change habits and behaviors that challenge their ability to function in a healthy manner.