5.1 Significance of psychosocial needs and its assessment in family
Family is the smallest unit of the society in which members are hold together by marriage of two person of opposite gender. Of all human groups, family is the most important primary group, which consists of with/without children who have set of obligation/expectation towards each other. These sets of obligation are framed according to their cultural background.
Definition:
“Family is a group of persons united by ties of marriage, blood or adoption, constituting a single household, interacting & inter-communicating with each other in their respective social roles of husband & wife, father & mother, son & daughter, brother & sister and hence creating a common culture.” (Buiguess & Locke)
Parenting style of intellectual disable (ID) retarded children is more challenging in comparison to normal children. Parents’ attitude to dealing with children and level of parenting stress is different because parents of mentally retarded children face more complexity in life and difficulty regarding rearing of a child and face different type of psycho-social problem. Aim of the study is to provide information and aware the parents of children with ID for enhancing quality of life as well as their positive mental health. Methodology used is Literature search of both electronic databases including PubMed and manual searches. Conclusion is that the professionals can help the parents to cope with the crisis by behavior modification technics, examining the resources of the Family, including role structure, emotional and financial stability and can help them to deal effectively with the situation.
Parents having a child with mentally challenged experience a variety of stressors and stress reactions related to the child’s disability and known to get impacted in many ways because of having a special child. These include feeling sad, depression at various stages of life and experiencing other emotional reactions. It has seen that parents have a negative attitude towards their children with mental retardation. A study indicated that father’s involvement in the lives of their young children with severe intellectual disability was highest in the areas of playing, nurturing, discipline and deciding services. Psychosocial problems, which are faced by parents as well as the family of the ID (at the initial stages) are mentioned below:-
· Painful and Difficult to Accept When a doctor gives the parents the news that their child is Mentally Retarded and will never be completely normal, it is too painful for most parents to face. Many parents spend years in denial, trying to find some solution or cure to this problem. They might go from one hospital to another, try alternative forms of medicine or look to religion for a miracle.
· Admission of Guilt – The parents wonder if they did something wrong, during the course of the pregnancy or after birth, while taking care of the child. They wonder if God is punishing them for their sins.
· Stigma – Many parents might feel that a Mentally Retarded child is something to be ashamed of and cannot be allowed out of the house. Neighbors, relatives or others might make cruel remarks about the child and parents might feel isolated and without support.
· Helplessness, Hopelessness and worthlessness- Many parents don’t know how to get help for their child once he/she has been diagnosed with Mental Retardation. The sense of helplessness comes both from a lack of understanding about Mental Retardation and a lack of information about the resources available for Mentally Retarded individuals. It might also arise from insensitive handling of the case by the mental health professional/special educator, who might not have enough time to talk to each family at length about their experience
· Mental and Behavior problems- Many parents find it difficult to handle behavior problems like high expressed emotion, screaming, crying, inability to concentrate, irritability, anxious, aggressiveness, stubbornness etc that a child with Mental Retardation might have. For parents, especially mothers, who have to take care of household tasks and work apart from taking care of the child, patience can wear thin. Getting angry with the child or hitting him/her also does not help very much. Often, the child might not understand how disruptive his/her behavior is to others and why they get angry.
· Poor Prognosis and Dilemma-Its universal truth that ID is not illness, it is lifelong condition. One of the main concerns of parents with mentally retarded children is about how their children will be taken care of when they die. They feel that no one else can take care of their child with same love and care that they have and they are scared about how their child will manage to survive in the world.
A psychosocial assessment is an evaluation of an individual’s mental health and social well-being. It assesses the perception of self and the individual’s ability to function in the community. It typically involves a number of questions asked by the health care provider to assess multiple domains to understand the individual. The goal of the psychosocial assessment is to understand the client to help provide the best care possible and help the individual to obtain optimal health.
5.2 Assessment of parental needs and its implication in planning IFSP
Individualized Family Support Plan
The Individualized Family Support Plan is a written treatment plan or document that identifies the child's and family's strengths and needs, sets goals (for both the child and family members) or maps out early intervention services for the child and determines the steps that will be taken to achieve these goals.
It is a family based approach to services due to the central concept and understanding that supporting a child’s family lends itself to supporting the child or that the family is the child’s greatest resource and should be included in all stages of the plan.
A multidisciplinary team, which includes the parents, develops an Individualized Family Support Plan following the determination of eligibility, for each child and family.
Components
1. Child's current level of functioning and need :
· It includes strengths, interests and areas of concern.
· Areas include physical, cognitive, communication, social development and adaptive environment.
2. Family information
· This includes details about family’s priorities, concerns and resources as they relate to enhancing the development of the child.
3. Statement of the major outcomes:
· This includes writing the statement of the major outcomes (or goals) expected to be achieved for the child and family.
· These should be short term goals and not the achievement goals for the child’s entire life.
· The outcomes or goals must be relevant, specific and measurable.
· It should include the criteria, procedures and timelines used to determine the degree to which progress toward achieving the outcomes is being made.
4. Support and Services:
· The support and services that the child will receive should be listed in detail to achieve the stated outcomes provided within the child and family's daily routines and activities.
· Supports and services can be in the form of educational, medical, paraprofessional and social services.
5. Place and Time:
· Where in the natural environment (school, home or community) the services will be provided should be mentioned.
· When the services will begin, how often they will occur and how long they will last should also be mentioned
· Who will pay for these services should also be mentioned (A variety of funding resources may be used to pay for these services including state and federal government resources, private insurance, family resources and/or local agencies.
6. Service Coordinator:
a. The name of the Service Coordinator must be there. This person is the family's primary contact for assistance throughout the IFSP process, and is responsible for the implementation of the plan and coordination with other agencies and people.
b. He should also connect the family with other families and ensure that they understand their rights and procedural safeguards.
Process
1. Identify Family Concerns, Priorities, and Resources:
The family's concerns, priorities, and resources guide the entire IFSP process. Early intervention should be seen as a system of services and supports available to families to enhance their capacity to care for their children. The notion of partnership between the intervention team and the family must be introduced and nurtured at this beginning point of the IFSP process.
2. Identify the Family's Activity Settings:
All children develop as the result of their everyday experiences. It is important to document valued, enjoyable routines (bath time, eating, plays activities, etc.) and analyze them to see if they offer the sustained engagement that leads to learning opportunities. Likewise, it is important to identify the community activity settings (e.g., child care, swimming) that provide opportunities for learning.
3. Collaboratively Develop Expected Outcomes:
The team now meets to review the information and the family's concerns, priorities, and resources to develop statements of expected outcomes or goals. Active family involvement is essential. Collaborative goals focus on enhancing the family's capacity and increasing the child's participation in valued activities.
4. Assign Intervention Responsibilities:
After outcomes are identified, the early intervention team assigns responsibilities for intervention services that support those outcomes.
Using a trans- disciplinary team model is one method of integrating information and skills across professional disciplines. In the trans-disciplinary model, all team members (including the family) teach, learn, and work together to accomplish a mutually agreed upon set of intervention outcomes
In a trans-disciplinary model, one or a few people are primary implementers of the program. Other team members provide ongoing direct or indirect services, such as consultation. For example, an occupational therapist can observe a toddler during meals, then recommend to the parent how to physically assist the child
5. Identify Strategies to Implement the Plan:
This step involves working closely as a team to increase learning opportunities, to use the child's surroundings to facilitate learning, to select the most effective strategies to bring about the desired outcomes, and identify reinforcers that best support the child's learning.
Implementation may involve a toddler participating in a library story hour one afternoon a week; a physical therapist showing family members how to use adaptive equipment; or a service coordinator completing the paperwork to pay for a child's transportation from his or her home to needed services.
6. Intervention:
Intervention strategies should help promote generalization of outcomes—i.e., the child performs new skills in a variety of environments after intervention has ended.
Interventions should target several outcomes during one activity. When a child participates in an activity, he or she uses a variety of skills from a number of developmental areas. For example, during mealtimes, a toddler may use communication skills to request more juice, fine motor skills to grasp a spoon, a social skills to interact with a sibling.
It should help a child become more independent in his or her world. The selected strategies might involve offering physical assistance during mealtimes, prompting the correct response during a self-care routine, or providing simple pull-on clothing to enable a child to dress without assistance.
7. Evaluation:
Both ongoing and periodic evaluations are essential to any early intervention program. An evaluation may focus on a child's progress toward obtaining desired outcomes and upon the quality of the intervention program itself. Ongoing monitoring of the child's progress requires keeping records in a systematic manner in order to answer such critical questions as -
· To what extent and at what rate is the child making progress toward attaining outcomes?
· Are the selected intervention strategies and activities promoting gains in development?
· Do changes need to be made in the intervention plan?
8. Review:
Periodically reviewing the IFSP provides a means of sharing results about the child's progress and integrating these results into the plan. Part C of IDEA requires that the IFSP be evaluated and revised annually and that periodic reviews be conducted at least every six months (or sooner if requested by the family).
This ongoing process provides a continual support to the family and child as they realize their own strengths and resources to help their child learn.
Rating Key:1. Family support initiated help needed ( . )
2. Family support continued with partial consultation ( - )
3. Family support independent ( )
5.3 Assessment of siblings and its implication in planning IFSP
Impact on siblings
Siblings are influenced by parents’ spoken or unspoken feelings of acceptance,
disappointment, denial or grief. Some siblings become more tolerant while
others tell gently about their feelings towards their parents. Having a
handicapped siblings is a significant source of stress across the age span. It
demands extra care, adjustments, experience of teasing and embarrassment, and
future responsibilities.
Implication in planning IFSP
The sibling relationship is often the longest lasting family connection. Children growing up together in a home spend a significant amount of time with each other. This shared time builds a special relationship and connections that last a lifetime. When a child has a developmental delay or disability, the sibling relationship can have an even greater impact because connections with other children may be more difficult. Children in early intervention can learn a lot from their siblings throughout the day in a variety of situations, such as meal time and play time. For their brothers and sisters with disabilities, siblings may fulfill many roles: friend, teacher, role model, and supporter. A big brother or sister might love helping their sibling in IFSP. Still, at times they may feel jealous and say “it’s not fair!” that the child receiving IFSP services is getting special attention.
The Importance of Sibling Involvement
Families and their EI teams can plan ways to help siblings play and grow together. By involving siblings in the goals of individualized family support plans (IFSPs), all children—including the child with a disability—may benefit. For example, siblings can participate in speech therapy sessions. When siblings act as communication partners, they can help improve their brother or sister’s communication while developing a stronger sibling bond.
Siblings can also be involved in playtime with their brother or sisters with a delay or disability. Siblings can be great role models for age-appropriate behavior. Sometimes, siblings without disabilities may need extra coaching to help them play and interact with their sibling receiving IFSP because she may not respond in the way the sibling expects of a playmate.
Careful planning and targeted strategies can help make sibling interactions positive and fun. Consider a child in IFSP who is receiving supports for a physical disability. Throwing a ball back and forth may be difficult for this sibling pair, but an adult can coach the children to try rolling it back and forth. Or, consider a child in IFSP who is challenged in interpreting social cues such as body language. When a sibling holds a toy out to share, the sibling may not see this is an invitation to play. A parent may coach the sibling to include the words, “Share this dolly with me!” along with the gesture.
5.4 Assessment of extended families needs and its implication in planning IFSP
Impact on the extended family members
Grand parents often experience actual grief – a mourning for the loss of an expected grand child who would carry on the family tradition, and a sorrow for the life long burden and reduced opportunities their own child faces in rearing the grand child. When the relatives do not seem to understand or enter into a supportive role, their reactions to the child can be extremely painful for parents.
5.5 Assessment of family and community resources for inclusion and strengthening of family, documentation, recording and reporting
Families with special needs face a number of obstacles in the efforts to help their handicapped child to get into society and to obtain needed resources. It involves special policy for the handicapped in the society and assumptions about family responsibilities.
The stigma of
the handicapped persons is one of shame and inferiority. Such views are not
consistent with normal societal roles of friend, lover, co-worker, or adult and
society is reluctant to change its views. The most devastating consequences of
being handicapped are often not the direct physical or mental result of
impairment itself, but rather the attitudes and reactions of those who are not
handicapped.
A child with special needs impose demands, which stress the family’s ability to
function effectively. The entire family becomes more vulnerable to the
situations and transactions of the environment.
Supports for families can be organized in two broad categories - those that are relatively continuous and stable needs, and those that emerge at different stages of family cycle. When a child first enters the family, parents are often concerned about obtaining an accurate diagnosis and information about the effects of a handicapped condition. During infancy, they need the early intervention programmes. Then the child enters the school life. When the individual with disability is finishing school years, the family is more concerned about employment options.
Support
services
Social support or self-help groups have been increasingly popular forms of
family support among families who have children with disabilities. Support
groups may be organized by a professional or may arise informally through
association among family members.
Family members who meet others in similar situations have opportunities to make comparisons with others and to share positive experiences. Support groups may help to achieve a mastery or control over the situations. The sharing of information that often occurs in support groups may also lead to a sense of empowerment.
Family
education and information services
Educational programmes providing family members with information about
participating in decision making for their child’s educational or habilitation
programmes may directly enhance a sense of mastery and control through
empowering family members.
Family
professional relationships
One of the most important aspects of family support is the relationship between
the professionals serving a child with a disability and the family. A shift in
attitude, with professionals seen as consultants can lead to empower families
who really make a difference on the overall life of their children.
Support
from religious organizations
Bronfenbrenner, Moen, and Garbarino (1984) suggest that “researchers concerned
with the well-being of families would do well to attend to the part played by
religious institutions within the community”. Membership in a religious
organization may offer parents of disabled children several different kinds of
support including instrumental support, emotional/social support, educational
support, structural support.
Beliefs, regardless of their origins appear to be particularly important to persons who face stress due to events they do not expect, or cannot easily explain.
The nature of religious organizations and of personal belief systems suggest why these are so highly valued. For some parents, religions provides support directly related to the parents role as a member of a religious group. For other parents support comes from both the contributions of the group and the beliefs which groups member share. Yet for other parents, support is provided by their personal belief systems alone. Though many professionals overlook these supports, it has not been forgotten by the parents, and from these sources they often derive much of the strength they need to nurture their child with special needs.
Community Involvement
·
Physical
environment
Creation of barrier free environment for persons with disabilities would help
them to live as independently as possible in the community.
·
Social
security
Easily
accessible arrangements are needed by which disabled persons and their families
can appeal, through impartial hearing against decisions concerning their rights
and benefits.
·
Education
and training
Individualized, locally accessible and comprehensive educational services
should be provided to all persons with disability irrespective of age or degree
of disability (Refer to SESM-3 Block-4 Unit-1 for educational provisions). Parents
should be given the necessary support to provide as normal family environment
for the disabled child as is possible. Personnel should be trained to work with
the special needs families.
·
Employment
Employment services for the persons with mental retardation should include
vocational assessment and guidance, training, placement and follow up. Laws and
regulations should promote the employment of such persons.
·
Recreation
The disabled person should have the same opportunities for recreational
activities as other citizens.
·
Culture
he disabled persons should have the opportunity to utilize their creative,
artistic and intentional potential to the full, not only for their own benefit
but also for the enrichment of the community.
·
Religious
Measures should be undertaken to ensure that the disabled persons have the
opportunity to benefit fully from the religious activities.
·
Sports
All forms of sports should be encouraged and organized for the benefit of the
disabled persons.
Persons with mental retardation should not be separated from their families and communities. The system of services must take into account problems of transportation and communication, and the need for supporting social, health, and educational services. The existence of primitive and often hazardous living conditions especially in urban slums, social barriers may inhibit peoples readiness to seek or accept services.
An equal
distribution of these services to all population groups and geographical areas
according to need, certainly will empower the families, having disabled
children.