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Role of Parents and

UNIT 2 ROLE OF PARENTS AND FAMILY Family in Disability


Rehabilitation
IN DISABILITY REHABILITATION
Structure
2.1 Introduction
2.2 Objectives
2.3 What is Family
2.4 The Impact of Child with Disability on the Family
2.5 Functions of the family
2.5.1 Daily Care Needs
2.5.2 Emotional Bonding
2.5.3 Education
2.5.4 Financial Security
2.5.5 Recreation

2.6 Type of Family and the Dynamics


2.7 Need for Involving Parents and Family in Rehabilitation
2.7.1 Bridges into the Family by Forming Effective Parent
Pofessional Relationship
2.7.2 The Family as Partners in Rehabilitation of a Child with
Disability

2.8 Need to Strengthen Families


2.9 Ways to Strengthen Families
2.9.1 Educative Support
2.9.2 Facilitative Support
2.9.3 Personal Advocacy Counseling.
2.10 Let Us Sum Up
2.11 Unit End Exercise
2.12 Suggested Readings

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

2.3 CONCEPT OF FAMILY


Family is universal and typically consists of a married man and woman, and their
children.
A classic definition of family, according to anthropologist George Murdock, is "a
social group characterized by common residence, economic cooperation, and
reproduction. It includes adults of both sexes, at least two of whom maintain a
socially approved relationship, and one or more children, own or adopted, of the
sexually cohabiting adults."
Take a look around, you will find that people do not live by themselves. They live
in families, and it is not just in India that we live in families this is the case
everywhere. The fact is that family is universal. In other words, it is found in all
societies, all over the world.
Family implies marriage of the couple. Marriage provides legitimacy to the
relationship between the husband and wife, and the children born as a result of
it.
Family also implies common residence for all its members. In other words, all
family members live together in the same house. But you may also have seen that
sometimes the father lives away from the family because of his job, which may
be in another city. In such cases, even though the husband does not stay in the
same house as the rest of the family, he is still considered a part of the family.
Family consists not only of the married couple but also their children, both natural
and adopted.
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Role of Parents and
2.4 THE IMPACT OF CHILD WITH DISABILITY Family in Disability
Rehabilitation
ON THE FAMILY
The birth of a child with a disability or chronic illness, or the discovery that a child
has a disability, has a profound effect on a family. When parents learn that their
child has a disability or special health care need, they just begin the process of
continuous, lifelong adjustment. Adjustment is characterized by periods of stress,
grief, frustration, and isolation, and during this time, family member's individual
feelings of loss can be overwhelming, shutting out almost all other feelings. Coping
with uncertainty about the child's development may interfere with the parents'
ability to provide support for each other and to other family members. Even when
the diagnosis is clear, there are still many uncertainties - health, financial, and
programmatic.
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 while fulfilling work responsibilities. Older
families need information to make homes accessible and community-based long-
term care for frail elders or persons with disabilities.
Social and community support can reduce the stress experienced by families. The
support of relatives, friends, service providers, and the community can help ease
the adjustment period.
Just as families vary in their needs, support, resources, size, values and interactions
patterns, so they also vary in the way they meet family functions. Families of
children with disabilities may focus more intensely on certain functions and may
have difficulty attending to certain functions.

2.5 FUNCTIONS OF THE FAMILY


Let us now see what different functions a family performs.

2.5.1 Daily Care Needs


At birth, the young child is totally dependent upon adults for all its needs. Survival
would be difficult without adequate care given by the family members. In fact, the
family looks after not only the children but the other entire member’s too. Caring
for and giving protection to the children, the sick and the old is an important
function of the family.
A basic function of families consists meeting the physical and health needs of their
members. This includes the day –to day tasks of living, cooking, cleaning, laundry,
transportation, obtaining medical care needed, and so forth.
Daily care giving for persons with exceptionalities can be a burden for family
members. In some families the daily care needs of individuals with disabilities are
no different than for other family members. However, for those with severe
disabilities, care, assistance, and supervision of daily care is needed over prolonged
periods of time ( Benson, 1989). The chronicity of this responsibility can take a
toll on the wellbeing of care givers, especially mothers who have maintained much
of the responsibility for meeting these needs ( Willer, intagliata, & Wicks, 1981).
Although traditionally these chores have primarily fallen on mothers, fathers are
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Psycho-Social Model taking more active roles in this dimension of family life (Honby, 1988). Siblings
and extended family members may also be involved in the daily care process.
The extent and nature of responsibilities for daily care will vary depending on a
variety of factors such as the age of the child, the type, degree, and severity of the
disability.
As children with disability grow and develop more self-help skill, family daily care
responsibilities often decrease. Helping these children develop daily care skills is
an important part of family. School age children have been shown to be effective
in helping their brothers or sisters with disability develop basic self-help skills after
school while their parents were at work. Such skills included snack preparation,
bed making, and tooth brushing (Swenson-Pierce et al., 1987).
Respite services provide temporary care for persons with developmental disabilities
for the purpose of providing relief from care to the family or primary care givers.

2.5.2 Emotional Bonding


The affection and love received from parents and other family members is essential
for the proper development of children. The emotional bonding which close family
ties give, make children feel wanted and loved. They grow up to be better
adjusted adults than those who have not felt close family ties.
Families provide a very important environment in which to meet the needs of
physical intimacy well as to express feelings of unconditional love and esteem. An
individual with disability can have both a positive and negative impact on a family’s
ability to be affectionate. For example, a family can be drawn together and
experience a close sense of bonding as a result of having a child with disability.
Sometimes, the presence of person with disability may have a negative impact on
families, for example, some families fail to establish affectionate bonds with the
child who is disabled because the child is physically deformed.

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.

2.5.4 Financial Security


The family acts as a provider for all its members. It provides the food, the shelter
and the clothes that everyone needs. Other requirements of the family members
are also fulfilled. The work in the family is divided among all the members.
Different members perform different tasks. Some earn, some perform the household
tasks.
The presence of a family member with disability can create special economic
needs by increasing the family’s consumptive demands and decreasing its productive
capacity.
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Just as the presence of a family member with disability can negatively affect the Role of Parents and
Family in Disability
amount of money the family has to spend on other needs, so it can negatively Rehabilitation
affect the amount of money a family can produce. While professionals usually can
not directly reduce the economic impact of disability, they can provide information
on financial assistance available to families who request it.

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.

Check Your Progress 1


i) Family is _____________in nature
ii) Name the function of the family that is being fulfilled in the following:
i) When a child is saved from a dangerous situation....................
ii) When a child is taught the traditional skills .....................
iii) Mention any three functions of the family
........................................................................................................
........................................................................................................
........................................................................................................

2.6 TYPE AND DYNAMICS OF FAMILY


2.6.1 The Nuclear Family
The nuclear family generally consists of a married man and woman and their
unmarried children. In some cases, however, one or more additional persons may
be living with them, for example, the father’s unmarried or widowed sister. The
presences of a child with disability in nuclear family however can influence the
relationship and interactions between husband and wife.
The presence of a child with disability has impact on parent’s roles and may affect
fathers and mothers in different ways.
9
Psycho-Social Model The sex of the child can affect parent’s interactions with the child differentially. On
some fathers, regardless, of social class, the initial impact of the disability is
greater if their child is a boy, for mothers it is greater if the child is a girl.
Tallman (1965) found fathers to be more adversely affected by the disability of
a son than a daughter, and to cope less skillfully than mothers in raising either a
son or a daughter. Fathers to great extent than mothers have been found to be
more concerned about the stigma their family may face as a result of a child with
a disability.
Studies have indicated that having a child with disability can have a negative
impact on the parent’s marriage. Featherstone (1980) noted: A child handicap
attacks the fabric of a marriage in four ways.
 It excites powerful emotions in both parents.
 It acts as a disciplinary symbol of shared failure.
 It reshapes the organization of the family.

 It creates fertile ground for conflict.

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.

2.6.2 The Joint Family or Extended Family


The traditional joint family consists of a man, his wife, his unmarried daughters,
his sons and their wives and children. If the grandsons are married, then their
wives and children are also a part of the same joint family.

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.

2.6.3 Single-Parent Families


Single parent family means one parent, most often the mother because in divorces
they usually receive custody of the child or children. Single-parent families hold
a disadvantageous position in the society relative to parent families because they
are frequently characterized by a high rate of poverty, minority representation,
mobility, and low education Because of the special demands of raising a child with
disability, single mothers of children with disability have less choice about working
than other single mothers. Thus these single mothers must often face the strain of
raising a child with a disability along with work responsibilities.
Given these pressures, single parents may have neither the time nor the emotional
energy to be heavily involved in their child’s education and therapy. Some measures
can reduce the parental pressure for ex: switching from a home- based to a centre
based intervention program may relieve some parental pressure. Respite care and
involvement in support groups might also be important sources of help for parents
who feel isolated.

2.7 NEED FOR INVOLVING PARENTS AND


FAMILY IN REHABILITATION
The parents, grandparents, siblings and the typically extended family are a vast
pool of talent that lies under utilized at present. The rehabilitation scenario largely
in the developing world is of a “top-down" model with medical and rehabilitation
professionals "prescribing" the treatments and actually “giving" it to the person
with a disability without involving the family. This rehabilitation model is top heavy
with a huge team at the top and very few or no workers at the grass-root level.
The person with the disability is surrounded by a tight chain of rehabilitation
workers with parents generally neglected. This has resulted in: -
 isolation of such a child from his/her family
 withdrawal of parents from the child and her/his development
 ignorance and apathy of the potentials of this child
 mystification and fear about the disability and its impact
 Polarization of the child with the disability from the "normal" family. 11
Psycho-Social Model  Institutionalization of services.

Because of the ill effects mentioned above it is crucial to involve parents and
family in the rehabilitation of persons with disability.

2.7.1 Bridges into the Family by Effective Professional


Parent Relationship
All over the world, awareness has been generated that there have to be bridges
into the family, community and the professionals. If one has to make use of such
a priceless and vast resource, the family as the primary care giver of the child has
to be roped in.

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.

Effective partnership between professionals and families would depend upon

 Patience, sympathy and openness on the part of the professionals to understand


family’s 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/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.

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

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 are present in decision-making process.

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.

2.7.2 The Family as Partners in Rehabilitation of a Child


with Disability
The family members, relatives, friends and the community at large must be involved
in the rehabilitation planning of the child the family is the first and main focal point
and if it is roped in, counseled, trained and convinced, it can spread the message
and convince other members of the community. Any technical and professional
training by the professionals can be reinforced by family and this change can be
sustained. The family can in turn motivate and influence the community to accept
all persons with impairment. This change would be inbuilt, self sustaining and
would not disintegrate after the professionals leave the scene. Various benefits of
specialized training by professionals would be absorbed by the family. They would
accept the person with disability and treat her with respect. This change would
slowly percolate and become a way of life in the community.

Other practical examples of family involvement are grandparents providing respite


care to the parents of the person with handicap, sharing chores to provide relief
to the parents; siblings providing help in education, participation in play activities
and participation in peer group activities and relatives involving the exceptional
child in the family functions and economic activities.

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.

Family support is capable of influencing rehabilitation outcomes, and focuses on


the functions of support in relationship to adaptation to chronic illness or disability
and quality of independent living including work. Rehabilitation outcomes such as
treatment compliance, perceived psychological well-being, employment, and
mortality are affected by supportive family involvement and participation.

The actual presence of available services has provided needed encouragement to


family members of the disabled. The incorporation of family involvement needs to
be emphasized when working with the individual client.

A number of research studies, literature reviews, and program evaluations have


linked family involvement and support to positive outcomes for youth with and
without disabilities (Henderson & Berla, 1994; Henderson & Mapp, 2002).

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.

Rehabilitation professionals should be well equipped with all the information,


resources and training to meet the life span needs of persons with disabilities and
their families.

2.8 NEED TO STRENGTHEN FAMILIES


Over the years there has been a growing awareness that the adjustment to the
special needs of a child influences all family members. This awareness has generated
interest and has led to the development of support services for families to assist
them through out the lifelong adjustment period.

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.

Check Your Progress 2


i) Forming self help groups will help parents to gain
a) Friends
b) Money
c) Knowledge and skills
d) Leisure time
ii) Respite care means—-
a) Permanent care of the disabled child
b) Institutionalization
c) Home care
d) Temporary care
iii) Children’s behavior and sleep problems are key factors -
a) Parental stress.
b) Rejection in parents
c) Depression in parents
d) Financial burden on parents

2.9 WAYS TO STRENGTHEN FAMILIES


Families that care for individuals with disabilities range from young parents learning
to care for children with physical and mental disabilities to parents caring for
teenagers and young adults with disabilities, to frail and elderly parents of aging,
dependent adults with disabilities. Emotional, social and economic challenges
accompany a family's commitment to their family member with a developmental
disability. To provide sustained care for a child, a sibling, or an adult with disabilities,
families need access to supports and services.
Services to families with a family member with disabilities have a dual focus.
Those services support the health and integrity of family units, and the other which
maximize the strengths and potential of individuals with disabilities to independently
participate in and be included in their communities.
During childhood, family support services are intended to strengthen the family's
role as primary caregiver and prevent institutional placement of individuals with
disabilities. Throughout an individual's life span, family support services are intended
to strengthen and maintain family connections while fostering self-determination,
independence, and participation in school, job, recreational and community settings.
Adequate support services must be available to people with disabilities so that
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they can remain in the community rather than face inappropriate institutional Role of Parents and
Family in Disability
placements. Rehabilitation

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.

2.9.1 Educative Support


One of the important way through which families can be strengthened is by
educating parents. Parents typically need to be informed about their child’s disability.
Parents who receive complete and accurate information from the time they are
first informed of theirs child’s disability tend to seek out more information as their
child develops. The professional must be prepared to explain salient information
such as the type of disability, its prognosis, and its impact on the child and family
to the parents to help reduce their sense of anomie and confusion. This information
may need to be given to parents more than once so that they are able to digest
its meaning and to ask questions for further clarification.
As their child develops the type of information parents need will change. Questions
regarding educational placement, independence and sexuality will arise as the
child matures. Therefore, there is a great need to help parents to have the required
information regarding the child condition, prognosis, available services and their
role on rehabilitation.
The professionals cannot expect to be an expert on every disabling condition or
even on the entire ramification of any one condition. One can however refer
parents to written materials, other knowledgeable professionals and organizations
with specialized information about disabilities. Parents of children with disabilities
often need to learn special teaching techniques to care for their children. Professional
can help parents become familiar with techniques that can facilitate their child’s
continued development through training.
 Parent training
Parent training is one of the effective techniques to create awareness and to
sensitize them regarding the needs of the child. Professional must be careful
regarding how specific techniques are communicated to parents, because their
application may be misunderstood and thus misused. For example there are many
procedures available that can be used to reduce the occurrence of inappropriate
behaviours. If these procedures are use incorrectly, however their potential
effectiveness is lost and may become counterproductive. Therefore by training
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Psycho-Social Model parents about the child’s development, disciplining procedures, growth promoting
parent-child interactions and appropriate methods of behavior management, positive
change can be brought about in the parent child interactions and in family
functioning.

2.9.2 Facilitative Counseling


In addition to providing information, another way through which families can be
strengthened is through clarifying feeling parents may have toward their child or
events in their lives. Parents have many different emotions as they struggle to
come to grips with their disabled rather their idealized child.
When first told about their child’s condition, parents can not believe that they have
a disabled child. The professional can help the parents see their child in a realistic
light by providing information the parents requested and being careful not to thrust
too many realities on them before they are ready. The professional should
acknowledge that the parent’s dreams and plans for their child may be severely
shaken while reminding them that they and their child can still, to a large degree
live a productive and comfortable life. Especially after a diagnosis has been
communicated, information may bear repetition on several occasions so that parents
understand both the possibilities and potential limitations inherent in their situation.
It is important for parents to hear optimistic, yet realistic, appraisals of their child’s
potential and they are encouraged to seek help as soon as possible.
Opihory and Peters (1982) employing a stage model, provide a useful guide to
interventions with parents who have recently given birth to a disabled newborn.
Stage theory holds that parents generally follow a fairly predictable series of
feelings and actions after a child’s diagnosis has been communicated to them.
The stages are:
 Shock/Denial
 Anger stage
 Bargaining stage
 Depression
 Acceptance
During the shock/denial stage, the professional should gently provide honest
evaluation of the situation that the parents are confronting. Minimally describe the
child objectively and indicate special care is needed, professional should not
remove the parents hope or interfere with their coping style unless it is inappropriate
to the family.
When parents reach the anger stage, the professionals must create an open and
permissive atmosphere so that parents can vent their anger and pain. The
professional must be accepting of the parent’s criticism, even if it is directed
towards him or her, and not personalize their remarks or defend other professionals
or him. It is important to keep in mind that projected anger reflects the parent’s
own anxiety and stress in the face of a situation that will significantly change their
lives.
During the bargaining phase, parents feel that they can reverse their child’s condition
18 by engaging in certain redemptive activities, so professionals should point out a
child’s positive characteristic, encourage involvement and remain optimistic without Role of Parents and
Family in Disability
giving guarantees about child’s potential progress. It is also essential that parents Rehabilitation
continue to establish warm and loving relationships with their disabled child and
balance their life with personal goals that may be fulfilling.
The depression stage can be characterized by mild to severe mood swings. Mild
situational and time limited depression is common and parents need to be reassured
that what they are experiencing is normal. Feeling of depression does not occur
just once but can emerge at various stages of the family life cycle. Anger and mild
denial for example can resurface but should be considered normal unless these
feelings become chronic and are held rigidly,
During the acceptance stage the professional should continue to reinforce the
positive aspects of the parent-child relationship. This stage is typically characterized
by family relationships that are fulfilling because a realistic adjustment to the
disabled family member had been achieved.
Therefore, professionals need to assess the families, find out the emotional stress
they are undergoing, and families need to be strengthened at each of these phases
by providing information, required emotional support through sharing their feeling
and by reassuring which will lead to the acceptance of the child with disability and
better adjustment.
Child rearing is a challenging task for any parent but parents of children with
disabilities are generally burdened by additional stressors. The professional can
help these parents to cope by providing the support and understanding they need
to see that their child has value and potential and that the family can achieve many
of their goals.

2.9.3 Personal Advocacy


Parents have the ultimate responsibility and authority for the welfare of their
children. Parents typically want what is best for their children, yet they may not
know how to obtain it.
Personal advocacy counseling refers to the process of aiding parents actively and
purposively work for their own and their child’s welfare by obtaining support and
services they need. Personal advocacy helps parents become their own case
managers. Parents learn about their personal power to make positive changes and
use that power to do so.
The primary goal of personal advocacy counseling is to assist parents experience
a sense of control over their life. Parents, by experiencing this sense of potency,
may act with greater confidence and purpose when confronted with choices or
situations not to their liking. Personal advocacy counseling can help parents work
for their family’s welfare in a positive, determined manner.
Parents are a group that legislators listen to, and it is our view that professionals
must support parents in their efforts to make their voices heard so that the social
conditions for all people with disabilities continue to improve.
Parents, even if carrying out much of the care themselves, need effective support,
help with complex nursing care in the home and opportunities for short term
breaks from caring. This is an area of care in which health; social services,
education and the voluntary sector should work closely together in planning,
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Psycho-Social Model funding, and commissioning to provide integrated services. There is evidence of
interventions that have been successful in helping parents deal with these problems,
resulting in improved outcomes for children and parents.
Apart from these interventions, families can be strengthened through other ways
like helping families to form self help groups where every one shares one another
feelings and learn effective coping strategies from each other, and the other way
would be through community based rehabilitation ,where measures will be taken
at the community level to use and build on the resources of the community,
including the impaired, disabled and the handicapped persons themselves, their
families and their community as a whole. The other would be by providing
information about the financial assistance and the other services which are available
to families of children with disabilities.

Check Your Progress 3


i) Family strengthening process includes three major functions what are they
............................................................................................................
............................................................................................................
............................................................................................................
ii) Stage theory includes how many stages————
a) 2
b) 5
c) 4
d) 3
iii) When parents reach the anger stage professionals must
a) Provide honest evaluation of the situation
b) Point out a child’s positive characteristic
c) Reinforce the positive aspects of the parent-child relationship
d) Create an open and permissive atmosphere.
iv) The primary goal of personal advocacy counseling is
a) To help parents to get financial support
b) To reduce the stress
c) To assist parents experience a sense of control over their life
d) To help parents to gain social support

In conclusion, having a child with a disability is not a catastrophe for a family


system and does not have to be devastating for the parents, siblings or child with
a disability. Recent review of research points out that there is a large variation in
the experience of caring for a child with a disability. Practitioners need to be
aware of the fact that care giving produces both positive and negative experiences.
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Parents and grandparents may react to the care giving experience in many different Role of Parents and
Family in Disability
ways. In addition, practitioners need to keep in mind that caregivers and other Rehabilitation
family members have needs for support in addition to the needs of the child with
the disability.

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.

2.10 LET US SUM UP


In this unit you have studied the impact of child with disability on parents and
family, how the family functions having a child with disability and ways to strengthen
families of children with disabilities.

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

For comprehensive rehabilitation process an effective partnership between parents


and professionals is required. The professionals and parents are two sides of one
coin and both are interdependent for the effective integration of the child into
normal life. Families need to be strengthened by providing information about the
child disability, by sharing their feeling and providing emotional support, and by
encouraging them for personal advocacy and also through sensitizing them regarding
the various services, concessions and financial assistance which they can avail.
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Psycho-Social Model The family strengthening process mainly includes three functions they are educative
support, facilitative counseling, personal advocacy counseling. Apart from these
methods there are other methods through which families can be strengthened is
by encouraging families to form self-help groups, and through community based
rehabilitation. The main goal of rehabilitation is to strengthen families which in turn
will work for better rehabilitation of persons with disabilities.

2.11 UNIT- END EXERCISE


1. Explain in your own words the positive impact of having a child with disability.
2. Elucidate the strategies through which we can involve parents in the
rehabilitation of persons with disabilities.
3. Select a group of parents or families; assess their needs and find out the
effective methods through which these families can be strengthened

2.12 SUGGESTED READINGS


1. Naomi Dale (1996). Working with families of children with special needs,
partnership and practice. Routledge press, New York.
2. Lauren L. Lerner, MD, Family: Its crucial role in Rehabilitation.
3. English, R. William. The Role of the Family in Rehabilitation. Rehabilitation
Research Review, National Rehabilitation Information Center, N.E.,
Washington.
4. Shirley Glynn (2003). The Role of the Family in Treatment and Recovery
(MIRECC).
5. Bubolz, M.M., &Whiren, A.P (1984).The family of the handicapped: An
ecological model for policy. Family Relations, 33, pp.5-12.
6. Castellani, P.J., Downey, N.A., Tausing, M.B., &Bird, W.A.
(1986).Availability and accessibility of family support services. Mental
Retardation, 24, pp.71-79.
7. Ferhold, J.B. &Solnit, A. (1978).Counseling parents of mentally retarded
and learning disordered children. In E. Arnold (Ed.), Helping parents help
their children. New York: Brunner/Mazel.
8. Milton Seligman (1991).The Family with a Handicapped child. Allyn and
Bacon, London.
9. Augosta, J.M. & Bradley, V.J. (Eds). (1985) Family care for persons with
a developmental disability: A growing commitment. Boston, MA: Human
Services Research Institute.]
Internet Sources:
aappolicy.aappublications.org
http://www.cssp.org/uploadFiles/handbook.pdf.
http://parenthood.libraray.wisc.edu/

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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