Psychosocial Support & Special Needs

 

 

1. Understanding the Importance of Psychosocial Support for Children in Alternative Care

One of the ways that determine a person’s quality of life is their ability to form healthy relationships with not only other people but also with themselves. This refers to their psychosocial well-being, which is defined by psychological scientists as the “inter- and intraindividual levels of positive functioning that can include one’s relatedness with others and self-referent attitudes that include one’s sense of mastery and personal growth.” A child’s psychological wellbeing is deeply embedded in having a healthy family and a supportive environment within their community of origin. Their ability to form these positive support systems and self-awareness consequently contributes towards a successful lifestyle for the young adult leaving the alternative care system.

Children who enter the alternative care system have, to some degree, had their psychosocial wellbeing be negatively impacted. They’ve experienced life-changing events, such as the loss of a parent or separation from their community of origin, that can be highly stressful at their age. Some children may experience anxiety, suffer from attachment problems, sleep disturbances, and many other behavioral issues that heavily threaten their mental health and development. Careful consideration of these experiences is important in understanding how all stakeholders can positively contribute to the futures of children in alternative care.

When psychosocial support is needed, an assessment of the child’s wellbeing must be conducted in order to scope out the type of issues affecting the child, what resources are available to the child through their family or community, and how those resources can be strengthened for the benefit of everyone involved. Mental health interventions, such as therapy, psychiatry, or psychological counseling should be provided by trained professionals after the assessment and should reflect cultural relevance. These interventions are meant to empower children and allow them to feel included with the changes in their life. This encourages them to express their opinions and feel that they are actively contributing to the betterment of their quality of living.

With the right measures and actions towards protecting a child’s psychosocial wellbeing, the child is enabled to grow up and become a more resilient, independent, and healthy adult. Proper support allows the child to experience far less psychosocial stress in their lives, have strong support mechanisms throughout their lives, and become self-confident. It also makes them less likely to participate in acts of delinquency, unhealthy behaviors, or more passive displays of distress such as social withdrawal and difficulties forming relationships.

 

2. International Laws and Expectations Regarding Psychosocial Support

Internationally recognized organizations that are responsible for setting the standards for alternative care solutions for children and promoting their rights have all emphasized the importance of providing children with proper psychosocial support. They encourage the use of psychosocial activities within the lives of children that promote the children’s development, their relationships with others, their sense of control over their lives, and increase their confidence. The guidelines are directed towards all stakeholders supporting alternative care for children, such as caretakers, local agencies, state actors, and international agencies. Below are summarized excerpts from international guidelines and laws for providing psychosocial support to children in alternative care settings, that protect children from vulnerabilities and help them overcome adversities in the long-run.

 

3. a) Caretaker Responsibilities in Providing Psychosocial Support

Caretakers of children are the most closely involved in their psychosocial wellbeing and development. They have a responsibility to try to prevent distress in the children’s lives and respond to their psychosocial needs. As caregivers, they must try to promote stability for the child by showing them that the child consistently cared for.

First and foremost, caregivers should try to meet the day-to-day needs of children under their care, including any medical or health-related requirements, in order to build a sense of routine in the child’s life. The child should be given as balanced a diet as possible and have access to see a medical professional regarding any physical or psychosocial health concerns. Caregivers should also help the child to take any prescribed medicine, routine medical treatments, and immunizations. 

In addition, children also require a lot of attention, affection, and reassurance when it comes to addressing their development. Babies and infants, especially, will require a lot of physical attention and should be alongside their caregivers as much as possible. Caregivers should try to plan some time every day as family time and allow everyone to talk about any event; they should not try to problem-solve but simply listen and give comfort. It is also important to be as patient as possible with children so they feel comfortable talking about events from their past, concerns for the future, and even just about their feelings or natural responses. 

Caregivers should always involve children and provide opportunities for them to make and influence decisions, particularly regarding events or issues affecting them. Simple activities such as planning days with them can help children have a template for planning long-term life decisions and feel comfortable with the idea of setting goals to accomplish. They can also assist children in keeping in contact with family and friends once they leave the system so children will have a constant support system in their lives to look to.

 

3. b) Agencies’ Responsibilities in Making Sure Psychosocial Support is Provided

Agencies involved in providing alternative care solutions, like ONE Track International, also play a crucial role when it comes to psychosocial support because they not only act as a support system for the children in their care but also their families. Families may struggle to cope while having the responsibility for the care and protection of vulnerable children. Oftentimes, families are even unaware of the proper way to support their children. Agencies can help parents and alternative caregivers deal with their own distress, re-establish their capacity for good parenting, and re-affirm that they are not alone in this process. 

There are a number of ways that agencies can positively contribute to the psychosocial wellbeing of children and families. International organizations encourage agencies to establish culturally specific programs and activities that build families’ awareness of constructive coping methods to employ and harmful practices to avoid. Examples of these include individual casework with families, group work, using media to convey information, or community-led initiatives. The degree of formality of such events can depend on the situation or community and is up to the agency. 

Agencies that provide alternative care solutions are also responsible for providing caregivers with access to basic services, which help alleviate the burden of financial strains. Many low-income households in developing countries often refrain from participating in alternative care because they simply cannot afford to care for a child, therefore agencies can provide an escape from this distress that would allow families to direct more of their attention towards the welfare of their child rather than income. Helping families have access to and awareness of appropriate social, health, legal, economic, and housing support is also important for enabling families to have social security and safety nets to lean on.

Finally, the largest responsibility agencies have is to monitor and promote children’s and their families’ psychosocial wellbeing. Regular family visits, check-ins, and opportunities to discuss problems and issues in an open and honest manner helps prevent families from breaking down. They can lead community events or outreach initiatives that encourage openness among members to share experiences involving psychosocial struggles and create a network of families helping each other, including both adults and children. They can also work with community stakeholders to conduct training and awareness sessions on issues regarding protection, sexual and gender-based violence, child rights, and available solutions and services. The essential aim of agencies is to act as a reliable support system for families participating in alternative care to provide them with the comfort they need to have healthy lifestyles.

 

4. Other Essential Factors Affecting Psychosocial Support

Children in alternative care already have to cope with personal grief when they enter the system, but they also have to endure additional stressors that arise from having to change their lifestyles and losing a home — making the situation even more difficult. Some strenuous situations include having to move to a new home or area, significant interruptions in their education, separation from their community of origin, financial strain, and even stigmatization. Positive psychosocial support often depends more on the maintenance of these additional factors that signify a child’s quality of care. 

One of the strenuous factors is food security. Stable food security is obtained through the ability of a household to be able to provide enough food for the child. The food should also be obtained through socially acceptable ways, which include not resorting to emergency food supplies, scavenging, begging, or stealing. Malnutrition has been documented as a major factor that affects a child’s wellbeing, and severe child hunger has been associated with lighter levels of psychosocial distress among children. Having an established means of food security is positively associated with a child’s motor development, mental development, and also cognitive ability in the long-run — which is why it is essential to pay attention to and monitor a child’s nutritional needs.

The physical place where a child lives, or the quality of shelter, also influences the psychosocial development of the child. A good shelter should allow the child to feel safe, provide security, comfort, and protection from external threats such as the weather. A stable shelter is also a place where a child has lived for at least the past six months, providing a “home-like” feeling. When children are not placed in appropriate shelters, they tend to show aggressive behavior, as they have a hard time being comfortable in new situations and perceive change as threatening. Having instability leads to a child feeling like they always have to stay on their toes, making them easily aggravated, which is why having the feeling of being secure in a shelter allows them to develop a sense of stability.

In addition, children should have access to adequate health care services that are age-appropriate, including proper immunizations, health education (e.g. HIV prevention for youth), other preventative measures, and appropriate medical care when ill. Having adequate healthcare is a large contributor to a child’s overall development and wellbeing, as improved health leads to improved functioning and quality of life. 

Lastly, a child must have an identified caregiver in their life to help provide any other psychosocial support they may need and help build an emotionally secure environment. A child must be able to establish a nurturing relationship with their caregiver and always feel open and comfortable around them. Positive experiences with caregivers tend to promote the development of a sense of worth and self-esteem for a child and enable them to build an appropriate social-emotional connection with others. Without these experiences in their early childhood, the long-term development of children may suffer and they may grow up to have emotionally straining interactions as adults. The presence of consistent loving care is an important element in the health and psychosocial well-being of children in alternative care.

 

Transition to Home for Special Needs Children

1. Challenges Faced by Special Needs Children and Harms of Institutionalization

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) defines disabled or special needs persons as “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. Children with special needs face countless challenges in obtaining an ideal alternative care solution. Many of them end up with institutions for various reasons, which is an extremely disadvantageous situation for them to be in. 

Family poverty, stigma, discrimination, social exclusion, and lack of community resources and services for children and families with special needs all play a role in leading children to institutionalization. Parents of special needs children are often not involved in the decision to institutionalize their child, and in some cases and depending on their community of origin, some healthcare staff encourage parents to place their child in an institution. Parents sometimes do not have the resources to properly provide for their children and become desperate — placing them in institutions. When a child has a psychosocial disability, the situation becomes much more difficult to understand, and many parents feel as though they have no choice but to place their child in an institution. This is because children with psychosocial disabilities need a range of services and support in order to live their lives, and parents require financial assistance to support their child’s needs and often don’t have the facilities or education to understand the needs of children. Society’s approach to children with disabilities isn’t also very positive, as these children are often viewed as not “normal” and in need of “fixing”. Children with disabilities are often looked upon as inferior and judged based on the capabilities they lack rather than by the capabilities they do have. The human rights approach to children with disabilities puts emphasis on removing the barriers that prevent the full inclusion of such children, and their families, so they can be free of the harms of institutionalization in their futures.

The best place for a child to grow up is within a family. However, with the stigma around special needs children, it is commonly believed that institutions are a better home for them. This is almost never true, and growing up within a family is, in fact, equally as important for children with special needs because institutional environments perpetuate much more harm than good. According to the World Health Organization (WHO), institutional environments act as facilitators of violence and neglect for children with disabilities in many ways. Many institutions for children around the world are neither registered nor licensed to provide the expertise necessary for special needs children. The lack of registration also makes it almost impossible to monitor the work of these institutions and the children being affected by them. In addition, many institutions are overcrowded, have small rooms and wards, provide little contact between staff and children, thus creating an environment that is more abusive than caring.

This causes institutions to become impersonal, as staff often see their roles as general caretakers rather than sources of psychological care and support. Children often spend long periods in a room with no interaction with others, they may be physically restrained by being tied to their cots, and are exposed to physical violence. Children with psychosocial disabilities are especially at risk of sexual violence and emotional abuse, and may even be inappropriately given psychotropic medication for their disability. Staff at unregistered institutions often are either lacking in numbers or in training or both — providing improper treatment to children.  

The environment created by institutionalization puts children, especially those with special needs, in grave danger when it comes to obtaining a bright future. Children who spend a greater part of their lives in institutions have more prominent difficulties in reaching developmental milestones, however, a child who is placed in a family-based environment within the first six months of their life will have a substantially higher chance of optimal development. The lack of a quality relationship with a parent or caregiver leads to a higher chance of worsened mental and behavioral problems. Children with psychosocial disabilities in institutions also often develop attachment disorders. 

 

2. International Laws and Expectations Protecting Special Needs Children

As an organization supporting the rights and needs of all children, regardless of their special needs, ONETrack International aims to prevent and eradicate all the challenges special needs children have to face and protect them by following and promoting the international standards set in place by UNICEF and WHO. 

Based on The Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities, WHO lays out guidelines for protecting the rights of children with disabilities:

  1. The right to identity. Birth registration, and the right of a child to be cared for by their parent.
  2. Children with disabilities should never be institutionalized solely on the grounds of disability, and are best cared for in a family environment.
  3. Freedom from torture or degrading treatment or punishment, the right to live in the community, and to access health-care services. 
  4. The right to education, and for children with disabilities, the right to receive assistance so that they may access and receive that education.
    1. It is important to provide “inclusive” education — meaningful learning opportunities for all students (with or without disabilities) provided in the mainstream school system, with additional support to the needs of children with disabilities.
    2. Creating an inclusive educational environment requires changing the educational culture from one that discriminates against children with disabilities to one that welcomes and embraces diversity and differences.
  5. Early childhood intervention, consisting of multidisciplinary services, is recommended for children, usually up to 3-5 years of age, facing developmental challenges. 
    1. This includes psychosocial support, physical and occupational therapy, speech and language therapy, nutrition support and other interventions that involve parents or caregivers in therapeutic activities
  6. Parenting programs exist to equip parents and caregivers to meet the needs of their child, while peer support provides opportunities to share experiences with other parents and to learn that they and their children are not alone.
  7. Monitoring by independent authorities of families and communities involved in supporting children with special needs.

UNICEF additionally outlines, in more specificity, the guidelines protecting and promoting the rights and needs of children with disabilities in alternative care:

  1. Agencies should provide support to children, and their families and carers to prevent children with disabilities and other special needs being placed in alternative care where they could live with their families.
    1. This is because children with disabilities and other special needs are often placed in alternative care unnecessarily.
    2. Where this is not possible, alternative care should meet the needs of children with disabilities and other special needs
  2. Policy, Guidance, Planning, and Assessment
    1. Develop strategies and services to ensure that children with disabilities are not placed, and do not remain, in alternative care on the basis of their or their parents’ disability alone.
    2. Provide integrated planning and support across services including health, education, child welfare, social protection, and housing to meet the needs of children with disabilities and other special needs and their families.
    3. Ensure that children with disabilities and other special needs are not placed in institutions and that this includes children aged 0-3 years. A range of care options appropriate to the needs of individual children should be provided as alternatives to institutions and where children cannot live at home.
  3. Providing appropriate care and support
    1. Require mechanisms to be in place so that the needs of children with disabilities and other special needs can be fully assessed and ensure that there is input from specialist professionals where needed.
    2. Ensure children with disabilities have access to education (including vocational training and tertiary education), rehabilitation services, occupational therapy, healthcare, and child welfare.
    3. Provide support for families caring for children with disabilities and other special needs. This could include financial support, daycare and respite care, education, health, community support, and rehabilitation services in order that parents and the extended family can care for their children.
    4. Provide planning, short term, temporary respite care for children with disabilities as one means to prevent placement in long-term formal care.
    5. Provide support including financial support so that foster carers and carers in family-based care appropriately care for children with disabilities. Where appropriate, children with disabilities should continue to receive support as they proceed more into adult life.
    6. Ensure that attention is given to the importance of early childhood development and early intervention to ensure that the needs of children with disabilities and other special needs are met.
    7. Require appropriate physical access to be provided within homes, residential facilities and services supporting children and their families
    8. Ensure that children with disabilities and other special needs are fully protected by having child protection measures in place wherever they live
    9. provide appropriate care for children with disabilities in emergency settings
    10. Require planning, resources, and support to be available to children with disabilities and other special needs when leaving care and aftercare.
  4. Promote awareness and counter stigmatization and discrimination
    1. Challenge and develop measures to counter discrimination and stigmatization of children with disabilities and other special needs and their families. This should include training and awareness-raising for carers.
    2. Promote awareness for the rights of children with disabilities and other special needs and encourage the extended family, community and civil society to provide informal support
    3. Collect and analyze data and undertake research to better understand the needs of children with disabilities and other special needs and to inform alternative care service.

International human rights law recognizes the difficulties children with special needs face when entering the alternative care system and places detailed guidelines on how organizations around the world are responsible for maintaining and protecting the rights of these children. If these expectations are not met, these challenges will persist for children for generations, leading to continued low quality of life. ONETrack International is dedicated to abide by and promote these guidelines in all of its projects with the aim of providing appropriate care and support for special needs children, and an upbringing that is inclusive and free from stigmatization.

 

3. Factors Affecting Special Needs Children that Require Monitoring

Providing proper care and support for children with special needs requires many considerations by all the stakeholders involved. Different children, all have different needs and need support at varying levels and ways. Stakeholders must understand all these factors and monitor them throughout the lives of these children so that they can implement the ideal conditions for the wellbeing of the child. Here is a simple breakdown of the different types of special needs that children may need, with details obtained from the Arrow Child & Family Ministries: 

Primary Medical Needs

Some children enter the alternative care system with a serious ongoing illness or chronic condition that requires expert attention and the use of medical equipment. 

The characteristics of these type of special needs children include one or more of the following:

  1. Occasional to frequent exacerbations or intermittent to intensive interventions in relation to the diagnosed medical condition
  2. Moderate to serenely limited inability to perform daily living and self-care skills
  3. Daily to 24-hour/day access to on-site, skilled caregivers with demonstrated competence in the interventions needs by children in their care

Developmental Delays / Intellectual Disabilities

Some children in the alternative care system experience developmental delays or intellectual disabilities, either before entering the system or during it. 

The characteristics of these children include one or more of the following:

  1. Minor to severe difficulties with conceptual, social, and practical adaptive skills
  2. Minor to severe impairment in communication, cognition, or expressions of affection
  3. Lack of motivation or the inability to complete self-care activities or participate in social activities
  4. Inability to respond appropriately to an emergency
  5. Multiple physical disabilities including sensory impairments

Emotional Disorders

Children with emotional disorders oftentimes remain in residential treatment centers or emergency shelters while waiting for a family willing to invest the time and effort necessary to help them. These children with emotional disorders such as mood disorders, psychotic disorders, or dissociative disorders, and who demonstrate three or more of the following characteristics:

  1. A Global Assessment Functioning of 50 or below
  2. A current DSM diagnosis
  3. Major self-injurious actions, including recent suicide attempts
  4. Difficulties that present a significant risk of harm to others, including frequent or unpredictable physical aggression
  5. A primary diagnosis of substance abuse or dependency and severe impairment because of the substance abuse

Due to these various needs, many of these children end up in hospitals or other similar institutional settings when what they really need is a dedicated, skilled, and nurturing family. A child with medical or rehabilitation needs may require regular interventions from a skilled caregiver who has demonstrated understanding and knowledge of the child’s needs. This does not mean that this caregiver can only be found in an institutional setting, as family members can be trained and given the resources to provide for their child.

Guidelines indicate that these children need a structured supportive treatment setting, where caregivers are provided with specialized training to be able to give therapeutic support and any intervention necessary to improve the child’s functioning. This can include actions such as routine guidance and supervision, affection, reassurance, and involvement in the day-to-day activities of the child — providing them with a sense of development and security. Caregivers should also always have the freedom to reach out to and contact professionals for guidance and establish regularly scheduled appointments to keep track of the child’s wellbeing.

More generally, there are certain factors that affect all children with special needs and should be monitored regardless of the type of needs a child has. The factors that stakeholders should monitor and be responsible for fulfilling include the following, based on guidelines by the Better Care Network:

Providing Support for Family-Based Care

Finding families in alternative care for children with special needs can be a challenging task. Alternative care agencies are mainly responsible for finding and maintaining the right kind of family-based care for these children, as they need to find a family that is aware of the needs of the child and their rights growing up. As professionals, agencies are required to establish programs that provide recruitment, training, preparation, and support for caregivers of children with special needs. This can include specialized training programs provided at the beginning of and during the child’s placement in order to make sure that families have the correct information and skills to support the child in different stages of their life.

Access to Education

Inclusive education for special needs children is an essential part of their wellbeing and means much more than placing them into a mainstream classroom and actually providing them with access to quality education in the same equal manner as all children. Children with special needs should be given the opportunity to attend school and also provided any extra support they need to successfully complete an education. Whether that support comes from assistive technology to access education materials or individualized instruction or tutoring, they should have access to any resource that allows them to pursue their education. Special needs children may require specially trained teachers, such as professionals who can teach deaf children using sign language. Individual learning needs and preferences should not only be identified for all children but also implemented in order to provide a positive learning environment for all children.

Access to Healthcare Services

In addition to the same general health care needs as everyone else, children with disabilities should also have access to any special health care services such as physiotherapy, occupational therapy, or speech therapy. Children with disabilities can often face barriers in accessing basic and specialist healthcare services. This is because their families often cannot understand the complex health needs of their children and sometimes don’t have the information about the available services and resources. Families can also often face financial difficulties in providing the right healthcare needs for their child, as some of them require specialized services. 

Child Protection Measures

Children with disabilities are more prone to experiencing violence, abuse, neglect, and exploitation than the average child in alternative care. Research also shows that children with disabilities are three-to-four times more likely to experience violence than non-special needs children. This is often because children with disabilities are usually kept isolated from their community or are unable to communicate their experiences of abuse due to the lack of skills. While there are international and national legislative measures to address protection concerns for a child with a disability, agencies should monitor the families in the communities they work in and report incidences of violence, abuse, exploitation, and neglect. Much of the abuse for children with special needs can come from people in the child’s community, which is why organizations should take steps to ensure the whole community understands disability issues and the harms of stigmatization and discrimination. 

 

4. Community Engagement and Tackling Stigma & Discrimination

Community attitudes and actions heavily influence the wellbeing of a special needs child, which is why it is essential to engage the whole community in helping to break down the barriers that contribute to children’s exclusion. Inclusive local communities with strong social networks not only improve the quality of living for the children but also the entire community itself. Proper engagement requires making sure that all members of the community understand the rights and needs of children with disabilities and are willing to help enforce and promote those rights. When communities do not understand disability and are disapproving of it, they become less inclusive and make it seem impossible for a family to be willing to foster a child with disabilities. 

Many issues for children with special needs come from the stigma surrounding disability and taking care of children with disabilities. Stigma can be a powerful attitude and belief that leads people to reject, avoid, or fear those they perceive as being different, which can lead to discrimination and depriving individuals of their rights and life opportunities. People’s attitudes and beliefs are heavily influenced by the culture and/or religion of their upbringing. In some countries and communities, people believe that a family of a child with a disability is being punished or that having a disability is a person’s bad karma. Some cultures believe that caregivers of a child of a disability earn good karma and obtain great value for their own future. These beliefs can often be selfish and harmful for the basic rights of a child and lead independent lives, as these children are never truly given an opportunity to learn, grow, and be considered as adults. Such attitudes and beliefs can interfere with the quality of living for any child, and even more so for children with disabilities.

 

5. Children in Families (CIF) Cambodia as a Leading Example

It can be difficult for a non-governmental organization to monitor all the different factors, as well as the stigmatization, necessary for the wellbeing of special needs children. One of the organizations that ONETrack International works with closely in Cambodia, called Children in Families (CIF), leads a renowned project called the ABLE Project that deals with alternative care for special needs children. A representative of CIF, named Sreyny Sern, presented some details and insights of the project at a UN Geneva conference of how their organization aims to and accomplishes an ideal alternative care solution for children with special needs, as well as tackling the challenges that come with it. ONETrack International mirrors and promotes the efforts made by CIF and also supports to develop projects of the same internationally respected standard in its projects around the world.

The ABLE Project allows children with disabilities to be placed in CIF’s kinship and foster care projects, just like all other children. It equips and supports families to provide for the needs of children, keeping them away from institutions, and involved in their communities. The project helps to remove the barriers and challenges that children with disabilities face in order to make alternative care more inclusive. CIF recruits family representatives from the communities they work with to become advocates for children’s rights within their communities and become a positive influence on families around them to help eliminate the stigma around raising children with special needs. CIF believes that they don’t need to look for inclusive communities, but instead for inclusive families who can begin making their community more inclusive.

CIF acknowledges the difficulty of providing care for children with special needs without external support because it leads to high levels of family stress. CIF makes sure to follow up by providing holistic support, meeting the needs of both the child and the family. CIF highly values community engagement and supports the family to participate in normal community activities, positively contributing to the emotional wellbeing of the family and inclusivity for children. In addition, the project involves providing in-home therapy services to help each child achieve their potential in all developmental areas. They help children access any mobility aids or other adaptive equipment that they may need. Families are also accompanied to medical visits so that they can understand their child’s condition and treatment, as well as obtaining all the support they need is following doctors’ recommendations. CIF works with inclusive education programs so children have access to educational services and provide higher stipends to families to help with the increased costs of care. 

CIF aims to consider everything the child and family may need to be able to live out a normal life, and tries to help them along the way. As an organization working closely with CIF, ONETrack International aims to mirror the activities of the organization and do our best in providing children with special needs the potential to live their lives successfully.

 

Author

Ananya Jain
Boston University – Class of 2022
BA International Relations & Political Science

 

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About the author