Unit2: Working with families
2.1 NIMH Family need scale, family efficacy scale, family support scale
2.2 Needs and methods of family intervention, Child rearing practices, parenting skills
2.3 Disabled child versus non-disabled siblings,
2.4 Case history taking, home visits.
2.5 Sexuality, marriage and related issues.
2.1 NIMH Family need scale, family efficacy scale, family support scale
Families face a lot of stress and difficulties while caring for family member with Intellectual Disability. They encounter different problems at different stages. A different kind of family attitude is required towards mentally challenged children as compared to the other normal children. Parent s of mentally impaired children are generally Surrounded by environmental factors like education, family structure, trust, crisis, social support, health, values, role and responsibilities and sacrifice. All these factors influence the environment and attitude of families towards the children with intellectual impairment.
NIMH Disability Impact Scale : The Scale is developed by Peshawaria and Menon (2000).There are 11 areas in the scale – physical care, health, career, support, financial, social, ridicule, relationships, sibling effects, specific thoughts and positive impact ; which are explored separately for mother and father.
Identification data sheet consist of child characteristics-name, age, sex, level of mental retardation. Parent characteristics include relationship with index child, age, education, percapita income, occupation. In modified NIMH disability impact scale there are 11 areas:
· Physical care,
· Health problems,
· Career adjustment,
· Loss of support, financial problems,
· Social restrictions,
· Embarrassment,
· Negative effect on relationship,
· Negative effect on siblings,
· Specific negative thoughts,
· Positive impact.
NIMH Family Efficiency Scale : The Scale is developed by Peshawaria and menon (2000).Ther are 15 areas in the scale – sacrifice, faith in God, financial, values, health, trust, acceptance, crisis, social support, communication, roles and responsibilities, optimism, decisions, time and independence. Parents were interviewed thoroughly to get accurate responses to the items of the scale.
NIMH Family Support Scale(NIMH-FSS) developed by Peshawaria, Menon, Bailey and Skinner(2000) was used to collect the information regarding quantity, quality and quality of support available to the parents of mentally challenged and normal intelligence. This scale has been divided into six are as:
i) personal
ii) financial
iii) technicali
v) recreation
v) emotional and
vi) material. Each area is divided into 20 sources of support. The first ten are in relation to the index individual with mental retardation.
· Spouse
· Mother
· Father
· Siblings
· Paternal grandfather
· Paternal grandmother
· Maternal grandfather
· Maternal grandmother
· Paternal aunt/uncle
· Paternal aunt/uncle
· Friends
· Neighbours
· Organisations/agencies
· Boss/coworkers
· Doctor
· Other professionals
· Religious/support group
· Any other
2.2 Needs and methods of family intervention, Child rearing practices, parenting skills
Family intervention process
Family intervention is a method by which a professional tries to enable the family to solve problems or help to develop skill to face problem situation with stability.
In other words professional tries to strengthen family abilities to adjust with the stressful situation which is responsible for creating family disorder or crises.
Family crisis, family disorganization and intervention.
— Irrespective of type or form family and its socio-culture background, every member in the family is important and is assigned a role depending upon his status in the family.
— When role is confirmed, compromise is made between the obligation and expectations, which leads to harmonious relationship.
— When there is a discord, due to any reasons within the family, help is sought from outside sources. Method of rendering such help is called family intervention.
Family intervention process
1. Beginning Stage: Initially tries to establish with the family to ascertain facts related to problem, & its causes & effect, by taking detailed case history & also relevant data about the family.
2. Diagnostic Stage: Tries to analyze the facts gathered during the initial interviews, sets the puzzle in places, develop intensive, scientific & analytical understanding of facts related the problem.
3. Winding up Stage: This is a final stage where both (client & helper) are equally active. Indicators for successful weaning is judged through ability to handle transference
2.3 Disabled child versus non-disabled siblings
In any family, each sibling, and each relationship that siblings have, is unique, important, and special. Brothers and sisters influence each other and play important roles in each other's lives. Indeed, sibling relationships make up a child's first social network and are the basis for his or her interactions with people outside the family. Brothers and sisters are playmates first; as they mature, they take on new roles with each other. They may, over the years, be many things to each other -- teacher, friend, companion, follower, protector, enemy, competitor, confidant, role model. When this relationship is affected by a sibling's disability or chronic illness, the long-term benefits of the relationship may be altered. For example, the child with a disability may have limited opportunities to interact with other children outside the family; thus, social interaction between siblings often takes on increasing importance.
Nondisabled Sibling Reactions and the Family Environment
Living with a brother or sister, including one with a disability, can be rewarding, confusing, instructive, and stressful. Siblings of a child with a disabling condition express a range of emotions and responses to that sibling, similar in most ways to the range of emotions experienced toward siblings who have no disability (Powell & Ogle, 1985). Children react toward a sibling with a disability with feelings of love, empathy, pride, guilt, anger, and support; the predominance and prevalence of these reactions have great impact on the levels of stress and coping ability of the sibling with a disability. The positive or negative nature of the relationships between siblings and among family members may be influenced by factors such as these:
Each child's reaction to having a sibling with a disability will vary depending on his or her age and developmental level. The responses and feelings of the nondisabled sibling toward the sibling with a disability are not likely to be static, but rather tend to change over time as the sibling adapts to having a brother or sister with a disability and copes with day-to-day realities. Preschool-aged siblings, for example, may feel confused, afraid, anxious, and angry about a brother or sisterisability or illness. All children are different; the intensity of a child's concerns, needs, and experiences will vary from sibling to sibling, as will a child's reaction to and interpretation of events. The younger the child the more difficult it may be for him or her to understand the situation and to interpret events realistically. Nondisabled siblings may resent the time their parents give to the sibling with a handicap and perceive it as rejection. They may wonder what is wrong with them that their parents love their sister or brother with a disability more. During the early years the nondisabled sibling may mimic the physical or behavioral actions of the child with a disability, or the nondisabled sibling may regress in behavioral development. Later on, he or she may be prone to extremes of behavior such as "acting out" or becoming the "perfect" child.
Elementary school-aged children may feel embarrassed or ashamed as they recognize differences between their sibling and someone else's brother or sister. They may worry about "catching" or developing the problem, and they may feel guilt because they themselves do not have a disability. They may also feel protective and supportive of their sibling, and this may trigger conflicts with peers.
Young adults may have future-oriented concerns. They may wonder what will become of their brother or sister with a disability. They may also be concerned about how the people they socialize with, date, and later marry will accept the brother or sister with a disability. Additional issues faced by young adults may include genetic counseling when planning their own families, and coping with anxiety about future responsibilities for the brother or sister with a disability or illness.
Family Stress Factors
The birth of a child with a disability, or the discovery that a child has a disability, can produce stress among family members. Stress can also be caused by a number of ongoing factors, or by special circumstances. Siblings need an explanation for the tensions within the family and the cause of the tensions.
Some families are stressed by the amount of financial resources required to meet the needs of the child who has a disability. Some parents may expect nondisabled siblings to accept the brother or sister with a disability as "normal." This expectation can lead to internalized feelings of anxiety and jealousy which the nondisabled sibling may be reluctant to voice. The parents, in turn, may fail to recognize the child's unhappiness and may deny that a problem exists.
Planning For The Future: Sibling Concerns
Planning for the future raises many important issues for the family of a child with a disability. Powell and Ogle (1985) note that the most challenging of these dilemmas is the care of the adult sibling who has a disability. Even though nondisabled adult siblings have lives (and often families) of their own, they face unusual, additional responsibilities because of their unique relationship with their brother or sister with a disability.
The amount of responsibility that adult nondisabled siblings assume for their adult sibling with a disability varies with individuals and with circumstances. It is dictated by a consideration of family and job responsibilities, personal choice, and available community support.
Perhaps the most challenging issue families face is, on the one hand, encouraging and fostering the independence and self-determination of the person with a disability and, on the other hand, facing the reality that, at some level, assistance may be necessary.
It is important for parents, siblings, and professionals to utilize the positive resources discussed here in order to cope with a variety of special circumstances, and to adapt them to meet individual needs as they change. Together, family members, as well as professionals, must strive to accent the "abilities" of disabilities, not only for a brother or sister with a disability, but for the entire family.
2.4 Case history taking, home visits.
Case history
This data is collected when the child is brought to the school.
The information should be collected in the following areas:
· Family background
· Details about siblings
· Socio-economic status
· Pre-natal, natal post natal history
· Developmental history
· Other relevant factors.
Common Methods Used to take case history
· Interviews – By interviewing first-time clients, organizations can gather basic information pertaining to clients' concerns and lifestyles. They can also determine whether or not clients have used the services of similar organizations, and if they have, they can encourage clients to release this information to them to add to their case histories.
· Questionnaires – Standardized questionnaires ask many of the same questions that would be asked during a face-to-face interview. This approach is great for organizations that have little spare time to sit and converse with clients. The disadvantage of this method is that some issues may be overlooked.
· Combination – Combining these two methods is perhaps the best way to gather data for case histories. When organizations use a combination approach, clients are better able to fully explain their histories, and there is little chance of overlooking essential information.
Maintaining complete case histories is an important aspect of providing quality services to clients. A complete case history can help organizations in many different fields determine the best way to serve clients now and in the future.
Home visits
Home visiting programs are designed and implemented to support families in providing an environment that promotes the healthy growth and development of their children. Programs may target their services to families and caregivers who are at a particular disadvantage when it comes to establishing and maintaining such an environment. They may also focus on families in which the child is more vulnerable than the typical child because of health or developmental concerns.
Home visitation is a type of service-delivery model that can be used to provide many different kinds of interventions to target participants. Home visiting programs can vary widely in their goals, clients, providers, activities, schedules and administrative structure. They share some common elements, however. Home visiting programs provide structured services:
1. in a home setting;
2. from a trained service provider;
3. in order to alter the knowledge, beliefs and/or behaviour of children, caregivers or others in the caregiving environment and to provide parenting support.
Home visits are structured in some way to provide consistency across participants, providers, and visits and to link program practices with intended outcomes. A visit protocol, a formal curriculum, an individualized service plan, and/or a specific theoretical framework can be the basis for activities that take place during home visits. Services are delivered in the living space of the participating family and within their ongoing daily routines and activities. The providers may be credentialed or certified professionals, paraprofessionals, or volunteers, but typically they have received some form of training in the methods and topical content of the program so that they are able to act as a source of expertise for caregivers. Finally, home visiting programs are attempting to achieve some change on the part of participating families—in their understanding (beliefs about child-rearing, knowledge of child development), and/or actions (their manner of interacting with their child or structuring the environment)—or on the part of the child (change in rate of development, health status, etc.). Home visiting also may be used as a way to provide case management, make referrals to existing community services, or bring information to parents or caregivers to support their ability to provide a positive home environment for their children.
2.5 Sexuality, marriage and related issues.
Sexuality:
Sexuality is an important component in people’s lives, however forgotten in people with intellectual disabilities. Faced with this situation, people with intellectual disabilities tend to be in a situation of vulnerability with greater risk of sexual abuse and altered sexual behavior that give them difficulties to have a lasting relationship. Included studies must mention the perception of people with intellectual disabilities about their sexuality in relation to: education, difficulties, strengths, gender identification, the role of the family and their close circle.
Being evident the importance of sexuality in people with intellectual disability, this topic should be addressed from a personal level and their close circle (family and support networks) through sex education about: sexuality, anatomy and functioning of the body, sexual abuse, use of contraceptives, and sentimental relationships. Sexuality in people with intellectual disability should be approached in a multidimensional way. An overarching theme is to teach family and educators not to diminish the value that represents sexuality in people and to assist when needed to address the process of sexual development and sexuality.
Existing sex education programmes have failed in involving people with intellectual disabilities in the development of these programmes. Not involving the target population decreases the likelihood that the sex education programme will be effective. Their knowledge regarding sex education is mainly limited to topics such as safe sex, contraception and STI’s and tends to be superficial. Additionally, knowledge on safe sex does not always translate to safe sex behaviour. Finally, relationships are important for most participants; mainly because they don’t want to be alone.
People with intellectual disabilities and developmental disabilities (IDD)*, like all people, have inherent sexual rights. These rights and needs must be affirmed, defended, and respected.
Issue
For decades, people with IDD have been thought to be asexual, having no need for loving and fulfilling relationships with others. Individual rights to sexuality, which is essential to human health and well-being, have been denied. This loss has negatively affected people with intellectual disabilities in gender identity, friendships, self-esteem, body image and awareness, emotional growth, and social behavior. People with IDD frequently lack access to appropriate sex education in schools and other settings. At the same time, some individuals may engage in sexual activity as a result of poor options, manipulation, loneliness or physical force rather than as an expression of their sexuality.
Position
Every person has the right to exercise choices regarding sexual expression and social relationships. The presence of IDD, regardless of severity, does not, in itself, justify loss of rights related to sexuality.
All people have the right within interpersonal relationships to:
With respect to sexuality, individuals have a responsibility to consider the values, rights, and feelings of others.
With respect to the potential for having and raising children, individuals with IDD have the right to:
Marriage:
It is a well know fact that in India marriage between disabled and able-bodied persons is not encouraged. Disabled persons are expected to marry other disabled persons. Arranged marriages are quite prevalent in India. And often matches for disabled people are often made only with a person with disability. This trend is a huge hurdle in the path of inclusion of disabled people in the mainstream.
To get around this problem, the Government of India and various state governments provide monetary incentive to the couple — if one of whom is a disabled person. The idea is to encourage able-bodied people to get into wedlock with persons with disabilities.
Premarital counseling is a type of therapy that helps couples prepare for marriage. Premarital counseling can help ensure that you and your partner have a strong, healthy relationship — giving you a better chance for a stable and satisfying marriage. This kind of counseling can also help you identify weaknesses that could become problems during marriage.
Premarital counseling is often provided by licensed therapists known as marriage and family therapists