I. STATUS OF PERSONS WITH INTELLECTUAL DISABILITIES IN DEVELOPING COUNTRIES :
Well over 90% of children with intellectual disabilities and adults will receive special assistance in affluent west, whereas in the developing world, only one in twenty can expect any form of help (WHO, 1985)
Despite the common term used as Developing countries, such nations vary greatly in terms of cultures, social customs, politics and government spending on health, education and social services. In a country like India, similar variations are often apparent in various states. Hence the situation in one state vary greatly from that in a neighboring state. For example, Karnataka and Maharashtra are leading in providing services to the MR, Bihar & UP are lagging behind.
Following contrasts can, therefore, be drawn between the developing and the developed world:
II. THE WAY AHEAD
How then are we to create a better life for people with intellectual disabilities in the developing world? First, we need to be clear on what we are trying to achieve. Following is the list of the achievements which we might work towards. These are all attainable, particularly by people with Down Syndrome.
In urban settings, the lifestyle of an adult will be enhanced if they
III. STRATEGIES TO ACHIEVE THE ABOVE:-
Threefold strategy is proposed for attaining these goals :
The depressing analysis, as above, had led some to question the wisdom of focussing our intervention efforts solely on people with disabilities while ignoring the wider social context in which the recipients live. Rather, the solution they espouse, is to empower communities to manage and direct their own development and in so doing to help all their members, including those disabled (Coleridge, 1993). This is new and radical thinking, for which western style disability specialists have little experience, sheltered as they are by professional status and job security.
But, I am convinced that the seeds of this thinking must permeate all the future strategies we may employ to create a better tomorrow for the world's children. This means that :
IV. PARENT MOVEMENT IN INDIA - PARIVAAR - a beginning
Parents scattered all over India, anxious to help their special children formed parent association to help themselves sharing the grief and mutual problem. National Institute for the mentally handicapped (NIMH), Secundarabad, a Government of India Society, is primarily entrusted with the job of carrying out research and training in the field of mental handicap and develop human resources in this field. Dr. D.K. Menon, Director, in early 1991 invited the representatives from various parent associations, working in isolation in various regions of the country, with the specific purpose of providing them a common platform to discuss common problems and take appropriate steps for furthering the cause of mental handicap. This was a good beginning which brought many parent leaders in the field to come together and chalk out strategy to deal with the Central Government and the State Governments to provide education, vocational training and final rehabilitation of the person with mental handicap. Due to encouraging support of NIMH and Ministry of Social Justice and Empowerment, Government of India, many more Parent Associations were formed in various parts of the country.
It was in the year 1990 in Paris, when International League of Societies for Persons with Mental Handicap (ILSMH), Brussells Belegum decided to hold Xth World Congress in New Delhi, India in 1994. I along with my son with mental handicap (Down Syndrome) and other delegates attending the Congress in Paris from India pleaded for this vary strongly. On the concluding day of the Xth World Congress, in 1994 parent representatives from various Parent Associations of India, who were attending the World Congress as delegates, came together on the concluding day and decided to form a National Federation of Parent Associations for Persons with Mental Handicap in India and named it PARIVAAR, which means The Family. Late Mr. Michael Mathias, the then Vice-President of ILSMH, was elected as the working President and I as the General Secretary of the Federation. Prof. Peter Mittler, past president of ILSMH, who was present on the occasion, blessed the Federation and advised the executive body to immediately start a news letter, as the first step, to keep the members in touch and informed about the latest developments in the field of Mental Handicap and the initiatives of the Government of India in this direction. The constitution of the Federation was finalised in 1995 at Bombay during one of the National Parents Meet, organised annually by NIMH, Secundarabad. There after in the year 1996 at Bangalore, regular Executive Council was duly elected with Mr. J.P. Gadkari as President and I as the General Secretary for two year term of 1996-98. The Federation got registered in New Delhi with branch office in Bangalore. The future plan of action, based upon the priorities of various Parents Association in the country, was chalked out by the Executive Council at Bangalore. Executive Council has been meeting regularly every six months to review the progress of 'PARIVAAR' and plan for the future.
It was in the year 1990 in Paris, when International League of Societies for Persons with Mental Handicap (ILSMH), Brussells Belegum decided to hold Xth World Congress in New Delhi, India in 1994. I along with my son with mental handicap (Down Syndrome) and other delegates attending the Congress in Paris from India pleaded for this vary strongly. On the concluding day of the Xth World Congress, in 1994 parent representatives from various Parent Associations of India, who were attending the World Congress as delegates, came together on the concluding day and decided to form a National Federation of Parent Associations for Persons with Mental Handicap in India and named it PARIVAAR, which means The Family. Late Mr. Michael Mathias, the then Vice-President of ILSMH, was elected as the working President and I as the General Secretary of the Federation. Prof. Peter Mittler, past president of ILSMH, who was present on the occasion, blessed the Federation and advised the executive body to immediately start a news letter, as the first step, to keep the members in touch and informed about the latest developments in the field of Mental Handicap and the initiatives of the Government of India in this direction. The constitution of the Federation was finalised in 1995 at Bombay during one of the National Parents Meet, organised annually by NIMH, Secundarabad. There after in the year 1996 at Bangalore, regular Executive Council was duly elected with Mr. J.P. Gadkari as President and I as the General Secretary for two year term of 1996-98. The Federation got registered in New Delhi with branch office in Bangalore. The future plan of action, based upon the priorities of various Parents Association in the country, was chalked out by the Executive Council at Bangalore. Executive Council has been meeting regularly every six months to review the progress of 'PARIVAAR' and plan for the future.
PARIVAAR delegation also met the Prime Minister of India in the year 1997 and again in 1999 and handed over a comprehensive memorandum demanding human rights for the Persons with Mental Handicap. Based upon the contents of memorandum work was taken up by various Ministries concerned under the Government of India, such as Education, Employment & Training, Law, Finance, Railways & Woman and Child Development with Ministry of Social Justice and Empowerment as nodal ministry, and the ball started rolling for the first time in favor of the mentally handicapped in the country. The awareness campaign started by PARIVAAR all over India, combined with lobbying at the Central and the State level, the positive results started showing in the form of providing Income-Tax relief to the Parents / Guardians (Finance Ministry), Choice posting for the Parent of the Mentally Retarded working in the Government of India services, Job Identification providing Railway Concession (Ministry of Railways) and expediting the formation of a National Trust for the Mentally Retarded, Cerebral Palsied, Autistic and Multiple Disabled. This was an answer to the Eternal Question in the minds of most of the parents "Who After Us ?" The National Trust Bill was cleared by the Cabinet on 8th Oct, 1999 and later passed by the Country in the winter session of its Parliament .
As the disability is a state subject in India, the state units of PARIVAAR pursued vigorously with the State Government to achieve the aims and objectives of PARIVAAR. Present status of the implementation of PDA, 1995 is quite encouraging because the State Co-ordination committees and the State Working Committees have been constituted in most of states, with due representation of members of PARIVAAR.
At the Centre, the Nodal Ministry has increased the Grant-In-Aid amount for running the Special Schools, Establishment of National Handicap and Finance Development Corporation to provide soft loans to the Disabled on low rate of interest, for self-employment, Preferential treatment & encouragement to Parent Association to start Special School s, Vocational Training Centres and Production Centres. The products made by various VTCs and the Production Centres are being marketed by a National Marketing Federation under Government of India.
PARIVAAR is also vigorously campaigning for increasing the public awareness about Mental Handicap through the media , both Print & Electronic. Television is very popular media in our country. Many programs related to the disabilities in general and Mental Handicap in particular, are aired quite frequently. Radio & Television, which has a wide coverage in our country, is utilised to promote the cause of the Mental Handicap.
PARIVAAR has increased its membership from 25 to 53 in the short span of four years since its registration in the year 1996. The Parent Movement has taken roots in our country. The awareness among the Parents has increased and so are their expectations and hopes for better and secure future for their children with Mental Handicap. To achieve the equalization of opportunities, equal participation and a dignified life of a useful citizen for the Mentally Handicapped is a Herculean task in a country like India where there are many serious problems such as population explosion, unemployment and poverty. But PARIVAAR is on the move and will not rest till its aims and objectives are achieved.
Due to severe funds crunch we are not able to reach the unreached. Thanks to a joint project named PARENT MOBILIZATION ACTION GROUP(INDIA) launched in May last with active financial support by INCLUSION INTERNATIONAL, we hope to widen our network in a large and divers country like India and strenthen the aims and objectives of our organisation.
FAMILY SUPPORT
I. ROLE OF FAMILIES AS COLLABORATORS
Parents and families of individuals with mental retardation have carried out many roles, some of them unwelcome or unjustified, some born out of necessity, and some of them eagerly embraced. These roles were the sources of their child's problems, organization members, service organizers, recipients of professionals' decisions, learners and teachers, political advocates, educational decision makers, and collaborators (Turnbull and Turnbull, 1997). No one role can characterize all parents, and some parents have played all or most roles. Families vary in the roles they assume, and professionals vary in the roles they consider appropriate and in turn recommend to and expect from families.
In their current role, families are regarded as collaborators. An important word in that sentence is "families". In the past, all roles were typically focused on parents, especially mothers. The reason for the change is that there has been increasing recognition that partnerships do not need to be limited - and should not be limited - to mothers only. Partnerships can and should involve relationships between professionals and other family members, such as fathers, siblings, grandparents, and even close family friends, who are vital resources in supporting and enhancing developmental outcomes for children with mental retardation.
Beginning in the mid 1980s, both professionals and parents began to emphasize that successful family life requires that the needs of all family members should be identified, addressed, and balanced (Patterson, 1991). This premise is consistent with family systems theory, which views the family as a social system with unique characteristic and needs. Family systems theory asserts that the individual members of a family are so interrelated that any experience affecting one member will affect all (Turnbull & Turnbull, 1997). Family systems theory assumes that families have their own way of approaching events in life, communicating among and between one another, determining rules for structure and change, and interacting with external organizations and individuals (Lambie & Daniels - Mohring, 1993). According to the theory, no one can be understood outside the context of the family.
The role as collaborators presumes that families will be equal and full partners with professionals and school systems and that this collaboration will affect the child and school system operations as well. Professionals can collaborate with families of children with mental retardation to meet their basic needs by (1) linking them with family support services, (2) helping them access social and emotional support, and (3) guiding them to the information they need (Turnbull & Turnbull, 1997).
II. DEFINITION & MEANING OF FAMILY SUPPORT
Family support has been defined "as any and all actions that serve to strengthen and sustain the family system, especially as these actions pertain to the family's assimilation and understanding of the child's disability" (Dunlap & Fox, 1996, pp. 41). Family support may include a variety of activities, ranging from information sharing to respite care arrangements; from training in behavioral techniques to emotional support and counseling and from personal future planning to advocacy (Barber, Turnbull, Behr, & Kerns, 1988). In early intervention, family support emphasizes family services and resources primarily designed to help the family cope with the demands associated with caring for their child (Dunst, Trivette, & Jodry, 1997).
(a) Family Support :
The support a family receives should be developed in partnership with the family, based on a family systems orientation, and implemented with the goal of strengthening family capacities. It is important to recognize that families represent the most powerful and pervasive influences that a child will ever experience. The qualities of family functioning (including cohesiveness, stability, and inter-activeness) and the extent to which parents and other family members can devote attention to child interactions may contribute more to the child's development than any extrafamilial factor (Robbins, Dunlap, & Plienis, 1991). In addition, family support must be individualized to afford an appropriate fit with the family's values, goals, preferences, activity patterns, resources, routines, and traditions (Turnbull & Turnbull, 1997).
There are some of the key factors guiding family support policies (Knoll et al., 1990): (a) More families are smaller than in past decades and fewer families have help from extended families as family and individual mobility increase; (b) There are many benefits to families, children, and the public when children are cared for in homes and communities; and (c) Families have wanted to have more control over their lives; they have begun to be empowered by making and carrying out their own decisions about the services they will or will not use.
Collaborating with families to meet their basic needs may not seem to be the same as educating their children, but it nonetheless is an important role for all professionals. The reason is simple: The more professionals support families to address their critical, basic, personal, and family needs, the more likely it is that they will devote time and energy to their child's educational needs, and, of course, the more likely it is that professionals and families will develop an empowering and empowered relationships.
According to Stormont (1998), preschoolers who are at greatest risk for poor behavioral outcomes are those with families who have negative, stressful situations, which include individual parent characteristics (e.g., maternal depression, feelings of less parenting competence, or negative interactional styles), and stressors that affect the whole family (e.g., family adversity or family cohesion). Professionals can get to know families informally by conducting home visits and interviews. It is important that professionals take the time to understand each family's dynamics in terms of their characteristics, interactions, and functions (Turnbull & Turnbull, 1997). Once family characteristics have been assessed, services can be tailored to the individuals needs of the family.
(b) Family Needs :
Across life cycles many challenges face the child with mental retardation, his or her siblings, parents, and other family members. For example, during early childhood, issues regarding obtaining an accurate diagnosis, informing siblings and relatives about disabilities, locating appropriate services, seeking to find meaning in the mental retardation, clarifying a personal ideology to guide decisions, addressing issues of stigma, or identifying positive contributions of exceptionality are encountered by many families. Parent often report that learning their child has mental retardation was the most traumatic thing that ever happened to them.
During childhood, adjusting emotionally to educational implications, clarifying issues of integrating versus separating placement, participating in IEP conferences, locating community resources, or arranging for extracurricular activities is possible issues faced by families When children become adolescent, their families may encounter issues like adjusting emotionally to possible chronicity of exceptionality, identifying issues of emerging sexuality, addressing possible peer isolation and rejection, planning for career/vocational development, arranging for leisure-time activities, dealing with physical and emotional changes of puberty, or planning for post secondary education. During adulthood, many families need to deal with issues such as planning for possible need for guardianship, addressing the need for appropriate adult residence, adjusting emotionally to any adult implications of dependency, addressing the need for socialization opportunities outside the family, or initiating career choice or vocational programs (Turnbull & Turnbull, 1990).
Interviewing forty parents of children with disabilities, D'mato and Yoshida (1991) found that children's lack of speech appeared to be more difficult during preschool years and that behavior problems appeared to become increasingly more difficult for the parents as their child matured and continued to require close supervision and management. According to these researchers, parents of children under the age of 2 years expressed a need for medical and diagnostic information, as well as specific suggestions for home carryover. Although medical concerns continued, information on language development became more salient for parents of 3- to 5-year-olds. For parents of children over the age of 5 years, information of programming supplements (i.e. inclusion, sex education, vocational, and recreational programs) were desired.
III SOCIAL AND EMOTIONAL SUPPORT
Many people tend to see mental retardation as a tragedy, and some parents experience continuing disappointment and grief at all stages of the child's and family's life cycle. However, Sinclair (1993) whose child has autism stated that the grief does not stem from the child's disability in itself. It is grief over the loss of normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with a person with mental retardation. Sinclair (1993) suggested that the best place to address these issues may be in parental bereavement counseling and support groups. In those settings parents could learn to come to terms with their loss - not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They could learn not to take out their grief for the lost child on their surviving children.
Informal neighborhood groups, extended family networks, friends, coworkers, and religious groups are examples of typical social support networks. Many studies have shown that social support is linked to reducing stress and improving emotional well-being (Beckman & Pokorni, 1988; Dunst, Trivette, & Cross, 1986). Social support networks can provide a variety of assistance, including emotional, informational, and material supports (Schradle & Dougher, 1985).
Unfortunately, families of children with mental retardation often have smaller social support networks than other families, and they often tend to get their support from nuclear and extended family members (Herman & Thompson, 1995). Families from low socioeconomic backgrounds also are more likely to have smaller social support resources (Taylor, 1988). Yet, when families do have access to social support, they often report greater satisfaction as parents and more positive interactions with their children (Dunst et al., 1986).
During early childhood years, parents of children with disabilities frequently express a desire to be linked with other families whose children have similar needs (Summers et al., 1990). Making these connections is part of the self-help movement in which people who face similar experiences offer each other (1) a psychological sense of community, (2) ideology for interpreting their experiences, (3) an opportunity for catharsis with others who understand the experience firsthand, (4) role models, (5) an opportunity to learn practical and tested coping strategies, and (6) access to a network of people for social relationships (Levine & Perkins, 1987).
Parent to Parent
Professionals or parents can provide support, in either group or individual setting. Many parents find that a support group opportunity with several parents coming together at regularly scheduled times for mutual support meets their needs. Professionals or parents facilitate these support groups. For some families, the one-to-one support of a professional (e.g. counselor, social worker, religious leader) best meets their needs. As a uniquely meaningful and innovative approach to parent support, parent to parent support rounds out the continuum of support options for parents by providing one-to-one support delivered by parents for parents.
A widespread and popular type ;of support in U.S. goes by the name of Parent to Parent. Parent to Parent programs establish one-to-one matches between a trained "veteran parent" - someone who has experience as a parent of a child with disabilities - and a "referred parent" who is dealing with an issue for the first time. The veteran parent provides emotional and informational support to the referred parent in personalized ways (Santelli, Turnbull, Lerner, & Marquis, 1993).
At the heart of the Parent to Parent program is the one-to-one match of some to listen and understand. The match is typically made on the basis of six factors : (1) similar disabilities, (2) a family facing similar problems, (3) a veteran parent who can respond within 24 hours, (4) children with disabilities who are close to the same age, (5) families who live close by, and (6) families who have a similar family structure (Krauss, Upshur, Shonkoff, & Hauser-Cram, 1993).
A public welfare center for individuals with disabilities in Korea offers peer counseling program, which is similar to Parent to Parent program for parents of children with Down syndrome. According to the peer counseling program, parents of children with Down syndrome who volunteer to participate are trained to be counselors. They receive training on various subjects including rehabilitation information of people with Down syndrome, counseling strategies, volunteer attitudes, and social welfare systems. Then, new parents of children with Down syndrome are searched through media or clinics. A counselor and counselee are matched based on (1) similar experiences or problems, (2) similar family relationships and coping strategies, (3) same socioeconomic status, and (4) close residence. The peer counseling program has demonstrated that it is effective support strategy for families of children with Down syndrome.
Parent to Parent programs help parents who have children with special needs find each other and to become reliable supporters for each other. When parents who have an infant with special needs are asked who they would like to talk to for support, they most often mention another parent who shares their disability experiences. Yet parents of children with special needs are often isolated from the mainstreams of family and community life, so finding another parent with a similar set of circumstances is difficult (Dunst, Trivette, & Cross, 1986). Parent to Parent programs provide an opportunity for parents who have children with special needs to connect with and support each other. This opportunity is created when the parent to parent program carefully matches a trained, experienced veteran parent in a one-to-one relationship with a parent newly referred to the program. Because the two parents share so many common disability and family experiences, an immediacy of understanding is typically present in the match. This makes the emotional and informational support from the veteran parent all the more meaningful. For some parents, the more intimate, individualized support that is a natural part of a parent to parent match best meets their emotional and informational needs. Parent to Parent programs have been providing the one-to-one matched experience to parents for 28 years in U.S. Today, over 500 active local and 25 statewide Parent to Parent programs provide the one-to-one matched opportunity to 35,000 parents in U.S. (Santelli, Turnbull, Lerner, & Marquis, 1993).
Santelli, Turnbull, Lerner, & Marquis (1993) who examined local Parent to Parent programs in U.S. reported that in approximately three-fourth of the local programs, the veteran parent received specific training the communication, listening, and problem-solving skills needed to be in supporting parents. In approximately 80 percent of the matches, the relationship lasted for longer than one month. In about one-third of the situations, the relationship lasted for more than six months. In addition to providing emotional support, the one-to-one match was often a source of information about disability and community resources, a source of referral to other agencies, a provider of advocacy training, and a source of group activities for individual and family participation.
Santelli, Turnbull, Marquis and Lerner (1997) also conducted a national survey of local Parent to Parent programs. The researchers reported that most referred parents mentioned the emotional support of having someone who shares their experiences to listen and understand, and receiving information about disability and day-to-day living issues, as the most important parts of their match. They also reported that most parent matches were made based upon similar disability and family issues. Although the primary mission of Parent to Parent programs is to provide support to referred parents, veteran parents benefited from the matched experience as well. Most veteran parents indicated that they received personal support from the program coordinator or opportunities for support group activities for themselves.
Singer and his colleagues (1999) who evaluated several Parent to Parent programs indicated that parents who used the programs for non-emergency help benefited from contacts with other parents by (a) feeling better able to cope with their child and family situation, (b) feeling better able to view their family and personal circumstances in a more positive light, and (c) helping other parents make progress on goals that are important to them.
IV PARENT - IMPLEMENTED INTERVENTION PROGRAM
Stormont (1998) stated that parents of children with hyperactive characteristics experienced more parenting stress and less parenting self-esteem than others. So the researchers suggested that parent education in child management may be an appropriate intervention for parents of children with challenging behaviors. Research has documented that parents who received child management training reported feeling more confident in their child management abilities. (Erhardt & Baker, 1990) or had an increase in parenting self-esteem and a reduction in parenting stress (Anastopoulos, Scheldon, Dupaul, & Guevremont, 1993). As a part of family support of children with disabilities, numerous parent-implemented intervention, parent education, or parent training programs have been conducted for the past years.
Parent-implemented intervention approaches fall along a continuum ranging from highly structured or adult-directed models to naturalistic or child-directed models. Adult-directed models rely on the careful structuring of antecedents, responses, and consequences. Children are provided with frequent opportunities to respond correctly and feedback is immediate. On the contrary, child-directed models use naturally occurring routines and capitalize on the child's motivation and social interaction.
Adult-Directed Intervention
Adult-directed interventions can be defined as highly structured and behaviorally oriented (Broen & Westman, 1990). It typically focuses on teaching parents the principles of behavior change. Perhaps the most common assumption underlying the intervention is that parents should be taught to play a more explicit didactic role for their children with mental retardation (Fey, 1986). Parents may be asked to play the role of teachers with their children, to set aside a fixed teaching time, to record behaviors in detail, and to reinforce desired response. In this intervention, parents are given specific predetermined programs to follow and activities are typically suggested by professionals.
The adult-directed intervention may be appropriate when a child requires a large number of training trials to differentiate and produce a particular communicative form (McCormick, 1990). Besides, results of the intervention are easily measured as objectives are preselected in specific, discernible, and behavioral terms. However, the intervention has several limitations. Fist, asking parents to consistently set aside time for structured sessions with their children may be too burdensome for some parents when they have other responsibilities. Second, because the topic of the teaching episode is preselected by professionals rather than being based on the child's interest, maintaining the child's interest and attention is sometimes difficult. In other words, this approach does not encourage children to take the initiative and to act on behalf of their own intent. Therefore, children may become bored and disinterested with the repetitious nature of the training. Third, the adult-directed intervention may interfere with fun and natural interactions between parents and their children. Instructing parents to teach their children specific skills, without considering the interactional process between them, may cause increasing feelings of inadequacy or guilt. These feelings may interfere with mutually pleasurable interactions. Fourth, parents are often taught to provide non-naturalistic or tangible reinforcers, rather than providing natural ones. Therefore, there is often little or no functional relationship between child responses and reinforcers. Finally, the intervention is lack of generalization of newly acquired skills.
Despite these limitations, the adult-directed intervention with its emphasis on intensity, consistency, and organization has been successful in teaching some skills to children with mental retardation. Regardless of the procedures use, most adult-directed programs have demonstrated that parents could successfully teach their children and modify their behavior. However, long-term follow-up results have been mixed. Initial changes made during the intervention have not always maintained, and parents frequently have reported that they were not using the intervention procedures or that they were unable to apply the techniques to new problems. (Salzberg & Villani, 1983).
Child-Directed Intervention
Child-directed interventions are characterized by a primary focus on the process of interaction between a parent and a child, and an emphasis on communicative socio-interactional skills. They are designed to take advantage of many opportunities to facilitate meaningful communication in the natural environment. Most child-directed interventions share the following characteristics: (a) following the child's lead, (b) increasing parental responsiveness, (c) prompting child limitations, and (e) intervening in situations that arise naturally during daily routines (Prizant & Bailey, 1992).
Child-directed interventions propose to foster positive, reciprocal, and communicative interactions between the parent and child. They utilize ongoing interactions in daily activities where the parent and child encounter objects, people, and events they can share. There fore the intervention may not place undue demands on the parent relative to the adult-directed intervention. Second, interaction in familiar contexts provides children with a reason to communicate. Third, it may be a useful secondary intervention for the child to promote the use of newly acquired skills. Finally, once parents acquire the intervention strategies, they show strong evidence of maintaining them (Tannic et al., 1992).
Mahoney, Boyce, Fewell, Spiker, and Wheeden (1998)examined developmental outcomes attained by children participating in various early intervention research studies. Results indicated that children attained higher levels of developmental functioning when their mothers increased their level of responsiveness while interacting with them. These change in parent-child interaction occurred in intervention programs that either focused directly on teaching interactive skills to parents or encouraged maternal responsiveness through selected parent-child intervention activities.
Reviewing parent-implemented communication intervention programs which emphasized increasing parental responsiveness and decreasing directiveness, Tannock and Girolametto (1992) suggested that increasing parental responsiveness of parents who already are responsive prior to the intervention makes them overly responsive, and in some cases, reduces necessary support to the child. Thus, these researchers proposed that communication interventions might have a greater impact on child outcomes if the interventions are tailored to include parents and children who exhibit less than optimal interactional patterns. Namely, increasing responsiveness of parents who are likely to be directive may be an effective strategy to facilitate their children's communication development. In fact, Hyun (1995) conducted parent-implemented communication intervention which emphasized maternal responsiveness of Korean mothers, who were inclined to be directive, of young children with developmental delays. The results showed that mothers could acquire the strategies successfully and their children's communication development improved.
V. SUPPORT FOR FATHERS OF CHILDREN WITH DISABILITIES
The effects of mental retardation on the family have been well documented in the literature, with the focus of attention generally on the individual with mental retardation and the mother. However, professionals are beginning to realize the importance of fathers, siblings, and extended families on the overall adjustment of process of the family of a child with mental retardation.
Typically, the concerns and priorities of mothers are the focus when professional work with families who have children with mental retardation, with little or not direct input from fathers. However, fathers are a critical member of the family system who influence their children and their families in unique ways. Professionals are challenged to learn more about fathers, their perspectives of their children, their roles within the family, and the nature of their relationships within the family.
Father-Child Relationship Generally, men approach problems differently than women (Davis & May, 1991). Women have a tendency to want to talk about the issues, whereas men often move directly to solving problems. In addition, fathers interact and play differently with their children than do mothers (Lamb, 1986). A father's response to having a child with mental retardation is likely to be different than a mother's (Davis & May, 1991). A father might set aside his emotional response and move immediately into developing an action plan for his child. In fact, Palmer (1999) who is a father of a 13-year-old boy with Down syndrome reflected that from the day their pediatrician called and said their child had Down syndrome, he had tried to approach his son's situation as logically, rationally, and realistically as possible. Part of that was concentrating on his immediate and long-range needs. Conversely, the mother might go to the phone and call a close relative to share her feelings about her child's disabilities. As members of the family system, fathers are critical players in their child's life. Therefore, it is imperative that professional seek input, and active, ongoing involvement from fathers, as well as mothers.
In research that investigated mothers' and fathers' interactive styles with their children with hyperactivity, Tallmadge and Barkely (1983) found that children with hyperactivity were more negative, less compliant in general, and compliant for shorter amounts of time, than were comparison children with their mothers. When interacting with their fathers, however, children with hyperactivity did not differ from comparisons in negativity or compliance.
There are a number of benefits for children, fathers, and the family in general when fathers participate actively in child rearing (Pruett, 1993). It appears that the closer the relationship a father has with his children, the better understanding he has of them (Lamb et al., 1987). Fathers who are actively involved in their child's life are considered to be more accepting and have higher expectations of their child. Fathers who participate in domestic routines, leisure activities, and learning experiences may have more positive perceptions of their children with mental retardation (Flynn & Wilson, 198). In Addition, fathers who are involved with their children who have disabilities report that this involvement contributes to meaningfulness in their own lives (Hornby, 1992). In fact, fathers who are engaged with their children report greater personal happiness and have fewer signs of physical sickness (Pruett, 1993). There is also increasing evidence that a father's expectations and acceptance of his child with disabilities may play a significant role in determining the family's attitude toward the child (Mclinden, 1990). When a father feels positive about his child with disabilities, other family members may be more likely to adopt that same attitude.
The family system may be enhanced when fathers are actively involved in daily activities with their children. One goal for professionals may be to ensure that both parents understand the importance of fathers' interaction with their children with mental retardation and the value of gender-specific approaches to play and interaction. Many fathers may not naturally get involved, but if mothers and professionals encourage participation, fathers may be more likely to participate. When fathers are not expected to play a primary role, a self-fulfilling prophecy may occur.
Concerns and Priorities of Fathers
Other differences between fathers and mothers may be their concerns and priorities for their child and family. Several authors have reported that fathers express more concern than mothers about future issues such as the child's ability to be self-supporting, the cost of providing for the child, the social dependency of the child, and legal concerns (Meyer, Vadasy, Fewell, & Schell, 1982). Palmer (1999) whose son has Down syndrome said that the hardest thing about being his child's father was contemplating the future. Conversely, mothers may be more concerned about the day-to-day issues of their child such as friendship with other children or their child's nutritious needs. When mother and fathers have different concerns, the issues of both parents should be priorities for professionals.
According to Bailey and Simeonsson (1998) who conducted a survey, mothers reported twice as many family needs for services and supports than did fathers. In a recent study (Flynn & Wilson, 1998), mothers identified information about their child's disability and ways she can help her child as most important. On the contrary, fathers chose service-oriented functions such as involvement with early intervention and respite care as most important for their child and family. Finally, Allred and Cooper (1991) who surveyed family needs found that fathers expressed a greater need for help in locating a doctor while mothers indicated a greater need for more friends to talk to and more time for themselves. Since fathers and mothers may differ in their priorities, an implication for professional is that input from both parents may be essential rather than 'good when it happens' (Flynn & Wilson, 1998).
Relationship between Professionals and Fathers
People often exhibit a higher level of comfort when discussing personal matters with an individual of the same gender. There is a level of comfort when women talk with other women and perhaps relate to one another as mothers. The same level of comfort may not be present when female professionals talk to and work with fathers. Conversely, fathers may experience less comfort when talking with professionals of the opposite gender.
Another gender difference between male and female is that women generally prefer relationship-building while men are more individualistic and competitive. (Tannen, 1990). In intervention programs, fathers may want to discuss just the facts and the options for supports and services. On the contrary, mothers may desire and seek opportunities for sharing and listening. Fathers may view this approach as intrusive (Turbiville, Turnbull, & Turnbull, 1995). Fathers may view relationship building as a secondary effect of their initial goal : securing services for their child. However, many recommended practices in early childhood special education programs are premised on the relationship between the professional and the family (Turbiville, Turnbull, Garland, & Lee, 1996). While relationships are important, the recognition that some fathers may not feel comfortable about the assumption is also critical.
Support for Fathers
Professionals may need to evaluate and change their own assumptions and practices to effectively include and support fathers of children with mental retardation. By evaluating their own beliefs and knowledge about fathers and their skills, they might find out new insights and ways to improve their practices in interventions.
Self-awareness
The first step in becoming more competent with fathers is self-awareness. Professionals may find themselves unintentionally stereotyping individuals within the family, particularly with families whose backgrounds are different from them. These potential biases are generally due to their past experiences. Professionals with personal biases may create barriers and actually interfere fathers from assuming a more active role in the services being provided. Flynn and Wilson (1998) suggested helpful strategies as following : (a) critically examining one's own values and perspectives about the roles and expectations of fathers; (c) reflecting on how one seeks input from fathers comparing to mothers; and (d) reviewing one's work-related activities over the past month and comparing the number of times talked to mothers versus fathers.
Increasing knowledge and skills
The second step is to increase knowledge about fathers and skills in working with them. Sparling, Biller, and Berger (1992) hypothesized that fathers might limit their involvement because professionals lack knowledge about fathers' interests, priorities, and concerns for their child. Involving fathers from the beginning, acknowledging their critical roles, and identifying their priorities can facilitate a more active role for fathers. Not only must professionals listen to the father's perspectives and respect his choices, but also respond to his preferences.
Flynn and Wilson (1998) provided some ideas to become more knowledgeable about and skilled with fathers as following: (a) learning to communicate with fathers and interpreting both verbal and nonverbal communication such as eye contact, facial expressions, body language, gestures, and proximity; (b) talking with fathers honestly and openly and attempting sincerely to understand their points of view; and (c) including fathers from the beginning and continuing to offer opportunities for involvement, even if fathers cannot participate in the first few sessions.
One of the best ways to improve skills in working with fathers is to spend time with them. Thus, one goal for professionals may be facilitate opportunities for fathers' involvement. To reach this goal, flexibility is crucial. Also making appointments and other scheduled events far enough in advance allows fathers to include allows fathers to include the event in their schedule. Services and supports that are provided in contexts that enhance the participation of both parents will be most successful. Barriers that may exclude fathers should be identified, examined, and addressed in such a way as to deliver a message that the professional values, seeks, and utilizes fathers' input and participation.
Additional strategies are as following (Flynn & Wilson, 1998): (a) including fathers as presenters or panel members at in-service to share their expertise or experiences; (b) personally inviting fathers to participate in special events sponsored by the program; (c) developing a father's support group with active leadership from fathers; and (d) ensuring materials distributed by the program are written in a manner likely to engage men as well as women.
VI SUPPORT FOR SIBLINGS OF CHILDREN WITH MENTAL RETARDATION
Not only does mental retardation in the family impacts parents, it also has a significant effect on brothers and sisters. Siblings experience the impact of a brother or sister with mental retardation in many different ways. Powell and Ogle (1985) have suggested that the effect on siblings may be either positive or negative, depending on a number of factors, including parental attitudes and expectations, family size, family resources, religion, severity of the child's condition, and the pattern of interactions between siblings.
Impact of Mental Retardation on Siblings
Some studies have found that siblings have a higher incidence of emotional or behavioral problems (e.g. McHale & Gamble, 1989). In the other hand, other research has not found significantly greater behavioral problems (e.g. Gath & Gumley, 1987). Indeed, some studies have found these siblings to have fewer behavioral problems than the siblings of children who do not have disabilities (e.g., Carr, 1988). In addition, a number of studies have found that siblings of children with disabilities have greater responsibilities for household chores (Wilson, Blacher, & Baker, 1989); but other research contradicts this finding (Gath & Gumely, 1987). Some research indicates that children who have siblings with disabilities experience lower self-esteem as compared to children who do not have a sibling with disabilities (McHale & Gamble, 1989). Other research, however, indicates no difference in self-esteem or self-concept between children with and without a sibling with disabilities (Dyson, Edgar, & Crnic, 1989). Research also points to a significantly higher level of internal locus of control in children who have a sibling with disabilities (Burton & Parks, 1994). As shown, the impact of disabilities on siblings varies across studies. However, the siblings of children with mental retardation should be included in family support approach as they are critical family members.
Don Meyer, a national leader in creating support programs for siblings of children with disabilities, identified a number of potential negative sibling impacts (Meyer & Vadasy, 1994). These included embarrassment; guilt; isolation, loneliness, and loss; resentment; increased responsibility; and pressure to achieve. Meyer and Vadasy also pointed out that opportunities and positive contributions can accrue. These included enhanced maturity, self-concept, social competence, insight, tolerance, pride, vocational opportunities, and advocacy. Meyer (1997) recently edited a book by 45 siblings ranging in age from 4 to 18. In talking about their brothers and sisters with disabilities and their feelings, the writers admitted embarrassment, anger, and jealousy. But, at the same time, they showed how protective and loving and surprisingly wise they were when it came to getting along in a family that was different. Grossman (1972) conducted one of the well-known sibling studies with 83 college-age siblings of individuals with disabilities. Benefits included increased tolerance and compassion, greater understanding of others, heightened awareness of prejudice and its consequences, and greater appreciation of their own health and intelligence. Siblings have expressed concern and worry regarding their future responsibilities for their brother or sister with disabilities. To examine the families' future plans, McCullough (1981) administered questionnaires to parents and siblings in 23 families with a child with disabilities. Only 41% of the parents thought their children without disabilities would assume at least partial care for the child with disabilities, whereas 68% of the brothers and sisters thought they would assume some responsibilities.
Sibling Support
It is essential to involve siblings in the social support network. One of the easiest ways to counteract childhood stresses to provide an open line of communication among all family members. Through communication, siblings can learn how to relate effectively to their brother or sister with mental retardation and to the surrounding environment as well. They can also learn how to communicate to family and friends about the disability. In addition, they can learn how to deal with such discomforting feelings as anger, resentment, and jealousy (Seligman & Darling, 1989).
Another way is to form a sibling support network (e.g., http://www.chmc. org/department/sibsupp/). In such network, siblings get together and share experiences and basic information about mental retardation. Through this network, siblings can also educate their peers about mental retardation. A public welfare center for individuals with disabilities in Korea conducted sibling support programs for elementary students. Five children who have siblings with disabilities met once a week for 10 weeks. For 10 weeks, they participated in various activities that were related to learning about disabilities and expressing their feelings. When the program ended, feedback from the children who participated and their parents were very positive and encouraging. In India, the situation is similar. Therefore, more sibling support programs need to be developed and to be examined how they affect siblings as well as children with mental retardation.
e-mail: jagdishmehta@hotmail.com
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