Professional Documents
Culture Documents
Role of Parents and Family in Disability Rehabilitation
Role of Parents and Family in Disability Rehabilitation
2.1 INTRODUCTION
When we look around at home, we find we are surrounded by members of our
family. We treasure their love and affection. The family is the most important
primary group in society. It is the first and the most immediate social environment
to which a child is exposed. In short, almost all of the child needs are fulfilled
within the family itself. Families are a critical source of support for children with
disabilities.
Living with a disabled child can have profound effects on the entire family–
parents, siblings, and extended family members. It is a unique shared experience
for families and can affect all aspects of family functioning. On the positive side,
it can broaden horizons, increase family members' awareness of their inner strength,
enhance family cohesion, and encourage connections to community groups or
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Psycho-Social Model religious institutions. On the negative side, the time and financial costs, physical
and emotional demands, and logistical complexities associated with raising a disabled
child can have far-reaching effects on the entire family. The impacts will likely
depend on the type of condition and severity, as well as the physical, emotional,
and financial wherewithal of the family and the resources that are available.
This is unit 2 on role of parents and family in disability Rehabilitation. In this unit
we are going to discuss about the role of parent and family in rehabilitating the
child with disability, the importance of parent professional relationship and on how
to strengthen families of children with disabilities.
2.2 OBJECTIVES
After going through this unit you will be able to:
Discuss concept of family and impact of child with disability on the family
Discuss major functions of family
Describe different types of families and its dynamics
Discuss the need for involving parents and family in rehabilitation
Examine parent professional relationship
Discuss the need for strengthening families
Discuss ways to strengthen families
2.5.3 Education
The family is the first school of a child- where the do’s and don’ts of society are
learnt. Learning how to interact with others, learning to respect and obey elders,
learning to be honest, and the like starts at home. The traditional skills are also
learnt at home and the child is prepared for future roles and career by the family.
Families of persons with disabilities may be confused about what to expect in
terms of educational integration. Families and professionals need to start teaching
students skills in decision making during early childhood and continue systematic
instruction in this area through out the educational program.
2.5.5 Recreation
Family members act as companions to one another. There is always someone to
play with or talk to. Celebration of festivals and events in the family like birth or
marriage provide recreation to members.
The family serves an important function as an outlet for members to relax and to
be themselves. Sometimes this function is curtailed due to the presence of a family
member with disability.
Integrated recreational opportunities are important sources for socialization and
learning to persons with and without disability. Such activities help meet the
psychosocial needs of the child with a disability.
Another important aspect which affects the family functioning is the type of family
to which the child with disability belongs. The members of the family sometimes
can be resourceful and supportive to the parents or may cause more stress to
them by rejecting the child with disability. So it is important to understand the
dynamics associated with type of family.
The role of divorce, marital disharmony, and desertions by husbands has been
reported to be disproportionately high in marriage where there is child with disability.
The presence of a child with disability can have diverse affects on parents as well
as on siblings on their relationship. But the existing literature indicates mothers to
be experiencing major stress compared to rest of the family members.
Although some studies indicate that having a child with disability can have a
negative impact on marriage, other studies shows a positive impact on marriage
as a result of having a child with disability. Some parents felt that their relationship
has become closer and stronger after having child with disability. Summers (1987)
found that parenting a child with disability was a source of pride for some couples.
The oldest male member is generally the head of the family and the decision-
maker for the family. But the women also play a significant role in decision making
as they influence the male members to a large extent.
For almost all Indians the family is the most important social unit. There is a strong
preference for extended families, consisting of two or more married, who share
finances and a common kitchen
Extended family or join family relationships can make a major contribution to the
quality of life of the child with disability, as well as provide parents with a network
of support. Grandparent’s and other extended family members must grapple with
their acceptance/rejection of the disabled grandchild; these extended family members
can relieve parental stress by helping with certain family function’s or add to stress
by rejecting the child.
Relatives, friends and neighbors may experience many of the same reactions to
10 disability as people in general. Often misinformation or lack of information and
experience create attitudes of fear, mistrust, dislike, or condescension. In addition, Role of Parents and
Family in Disability
these potential support givers may have to deal with their own feelings of grief, Rehabilitation
shock, anger or disappointment. Involvement of extended family members can be
a positive learning and growing experience for all family members. Educating
family and friends should be an ongoing process.
Grand parents often play important roles in extended families. Because of their
experience, they can share valuable and practical advice about child care and
child development.
Levels of extended family support and understanding may vary based on the
information extended family member’s posses. Extended family members need
accurate information and emotional support to deal with their own feelings while
also being able to provide support to the young children and their immediate
families.
Because of the ill effects mentioned above it is crucial to involve parents and
family in the rehabilitation of persons with disability.
Until 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. Professional should realize the importance of involving
parents and families in the rehabilitation process.
But the interaction between professionals and parents is often marked by confusion,
dissatisfaction, disappointment and anger. All research information, however, proves
that these are the initial stages which soon are transformed into mutual respect and
give and take.
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/he spends the
major part of her life there.
Parents are aware of the problems of the child but not able to gauge the
impact of disability.
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Parents have a major contribution to make in the life of the child. Role of Parents and
Family in Disability
Rehabilitation
Professional efforts would not yield full results without family involvement.
Parents have a right to know the various ranges 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:
o There is demystification about disability. The family should not get confused
by labels and jargons but are told about the impact of the disability and the
abilities of the child.
o The family as a whole decides to put its best foot forward to learn, to
experiment, with ideas and understand, accept and love the family member
with a disability.
o 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 faithfully adhere to their part in the rehabilitation of the child.
Therefore, the professionals and parents are two sides of one coin and both are
interdependent for the effective integration of the child into normal life. For the
parents to be ultimately responsible, it is essential that they are trained and sensitized.
The parents who are aware and trained can be effective in training other parents
having children with disabilities. They can form parents groups, self-help groups
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Psycho-Social Model for working towards welfare of their children. The parents and the family members
can gain knowledge and skill and become full-fledged teachers or back-up or
support teachers in educating their children.
While the value of family involvement is well-understood, the current system does
not make it easy for families to be effective partners in the transition process.
Multiple service programs form a confusing, fragmented, and inconsistent system
(General Accounting Office, 1995). Parent centers report that families of young
adults with disabilities are deeply frustrated by the lack of coordinated, individualized
services for high school students and the paucity of resources, programs, and
opportunities for young adults once they graduate (PACER, 2000). Cultural
differences may further complicate relationships with professionals (North Central
Regional Educational Laboratory, 1998).
Recent surveys indicate that families seek information on a variety of issues including:
helping people with disabilities develop self-advocacy skills; balancing standards-
based academic instruction with functional life skills training; inclusive education
practices at the secondary level; postsecondary options for young adults with
developmental and cognitive disabilities; pre-employment experiences and
employment options that lead to competitive employment.
The birth of a child with a disability or the discovery that a child has a chronic
illness is obviously a difficult time for the entire family, including siblings,
grandparents, and other relatives. Extended family and friends will need time to
adjust to these changes. These changes will take planning and time. We are
accustomed to typical family life; a child with a significant disability or chronic
illness is not typical. Therefore plans for an untypical lifestyle call for creativity and
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flexibility. It is important to bear in mind that the child will change as he or she Role of Parents and
Family in Disability
grows and develops into an individual with his or her own personality and ideas. Rehabilitation
Many families will find these changes difficult to handle. Communities may be
limited in their resources or in their interest in meeting the special needs such
families present. These combined factors can leave the immediate family with the
full time care of their child and can lead to feelings of isolation from other family
members, friends, and community activities, religious and social functions. Even
performing the basic necessities of daily life, such as grocery shopping, or cleaning
the house can become difficult to impossible.
Families with a child with a special need know the commitment and intensity of
care necessary for their children. The level of dedication and care becomes part
of daily life, part of the family routine, but this same commitment can make stress
routine too. Parents can become accustomed to having no time for themselves or
other siblings.
Basically, all families require some relaxation, revitalization, and the security. The
most difficult problem for a family having child with a special need is finding the
quality of care and expertise the child needs.
Families with disabled children often face high levels of day-to-day stress, and
many have high levels of unmet need for support services. This can lead to higher
levels of stress and ill health than those experienced by other parents. Research
shows that children's behaviour and sleep problems are key factors in parental
stress.
Some families also need high levels of health/nursing support, but do not always
receive this. In particular, families of children with learning disabilities show greater
levels of unmet need than those with children who are not disabled. Children with
multiple disabilities such as deaf-blind children need particular support.
Respite care is an essential part of the overall support that families need, to keep
their child with a disability or chronic illness at respite home. Respite care is
temporary care to persons with disabilities or special health care needs, including
individuals at risk of abuse or neglect, or in crisis situations. Respite care can
provide parents especially mother’s relief from the care taking responsibility and
opportunity to pursue things of her interest or time for relaxation.
A break from caring is one of parents' most frequently reported unmet needs, and
many children also appreciate a break away from their family. Short-term breaks
can provide a positive experience for children by enabling friendships to form with
other children and by encouraging social activities, new experiences and supportive
relationships with carers. Good short-term break services are associated with
reductions in maternal stress and reduction in marital problems and breakdowns.
Lowering stress levels in families is important for the well-being of the whole
family. Parents play an integral role in the family when a child is disabled or has
complex health needs. However, research shows that many feel excluded from
certain aspects of their child's care. Improved support, information and opportunities
to access services can lead to a feeling much more involved in the care of the
child.
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Psycho-Social Model Therefore, in order to improve the family functioning, parent –child interactions
and to help parents to cope with the day to day stressors professional need to
strengthen families through counseling on various matters which in turn can help
in the successful rehabilitation of child with disability.
Providers of family support services must have education and training that will
prepare them to work with families and people with disabilities of all ages in
inclusive settings to maximize each individual's potential and inclusion with their
peer groups.
To be effective and beneficial, family supports and services must be easy to
access, designed by the individual and their family, individualized based on functional
needs, flexible to changing needs and circumstances, and culturally sensitive.
The family strengthening process can be viewed as having three main functions or
components
Educative support
Facilitative support
Personal advocacy counseling.
Healthy family functioning is important and that practitioners need to support the
needs of the entire family and not just the needs of the child with a disability.
Finally, the research suggests that the way family members perceive their care
giving experience may be just as important for their coping and functioning as the
actual day-to-day demands of care giving. Practitioners working with young children
can play an important role in helping family members reframe their care giving
experience in positive ways and assisting family members gain the knowledge and
skills to successfully advocate for what their children need.
In conclusion as Dickman & Gordon, 1985 pointed out “…it is not the child’s
disability that handicaps and disintegrates families; it is the way they react to it and
to each other”
With the right mindset, support system, and a little leisure time the family of a child
with a disability can learn ways to deal with and overcome chronic stress in order
to not only survive but thrive.
Families are a critical source of support for children with disabilities. The parents,
grandparents, siblings and the typically extended family members play a crucial
role in the rehabilitation of the child with disability.Research indicates having a
child with disability can have both positive and negative effects on the entire
family. The functions of the family of a child with disability may get affected
depending on the age, type of disability, severity and gender of the child.The main
functions of a family are daily care needs, emotional bonding recreation financial
security and education.
Many families face challenges which are difficult to meet. These challenges can
force the family with the full time care of their child and can lead to feelings of
isolation. They may withdraw from other family members, friends, community
activities, religious and social functions. Families across the lifespan need access
to information, skills and resources that encourage positive growth and
development. Parents seek sources of support and skill to nurture and guide
children with disabilities while fulfilling work responsibilities
22 https://www.extension.iastate.edu/planofwork/families/Strengthening_Families.pdf.
www.dh.gov.uk/en/ Role of Parents and
Family in Disability
http://links.jstor.org Rehabilitation
http://www.sheffield.gov.uk/?pgid=22330&fs=n
http://www.nichd.nih.gov/childcare.
http://www.nichd.nih.gov/research/supported/seccyd.cfm
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