CHILDREN WITH COMPLEX DISABILITIES AND CONDITIONS
The causes and effects of complex disabilities and
conditions:
Complex
disabilities and conditions (CLDD) include those with co-existing conditions or
profound and multiple learning disabilities (PMLD. Complex disabilities or
conditions can be inherited from birth. These are for example cerebral palsy,
Down’s syndrome and visual impairments. Other disabilities and conditions can
be acquired for example traumatic brain injury, emotional disturbance and
hearing and sight loss. Others can be by the defects in the functioning of the
nervous system like epilepsy autism and learning disability.
Learning
disability happens when a person's brain development is affected,
either before they are born, during their birth or in early childhood.
Several factors can affect brain development, including:
the mother
becoming ill in pregnancy
Read more- problems during the birth that stop enough oxygen getting to the brain
- the unborn baby developing certain genes
- the parents passing certain genes to the unborn baby that make having a learning disability more likely (known as inherited learning disability)
- illness, such as meningitis, or injury in early childhood
However, they
also include children who have – among them those who have difficulties arising
from premature birth, have survived infancy due to advanced medical
interventions, have disabilities arising from parental substance and alcohol
abuse, and/or have rare chromosomal disorders. Many may also be affected by
compounding factors such as multisensory impairment or mental ill-health, or
require invasive procedures, such as supported nutrition, assisted ventilation
and rescue medication.
The typical
impacts of disabilities and conditions on children and young people.
Disabilities or conditions affect the
way a person understands information and how they communicate. This
means they can have difficulty:
- understanding new or complex information
- learning new skills
- coping independently
This
will in turn impact the child or young person socially and which will lead to
emotional and behavioural difficulties. In this situation the child or young
person will not develop normally and in the end the child in other
circumstances will have communication difficulties and won’t be able to access
education properly and will end up not getting any employment opportunities.
Ways in
which having a child with a complex disability or condition can impact on
different aspects of families lives.
Having a child with a complex disability or condition can impact negatively
on the different aspects of family life. The parents will
need to take on board a lot of new information in addition to having to cope
with the emotional difficulties of adapting to the news. They will also
suddenly have to face making important decisions during the different stages of
their child's illness. With this there may be:
The parents
are faced with a situation which will lead them to social isolation. The care that the child needs can be time-consuming and exhausting;
giving parents less opportunity to engage in normal family activities. The
disabled child's needs may be very different to the needs of a child without
disabilities and so there is less to share with other parents of similarly aged
children. Families with disabled children may also experience negative
attitudes from others, leading to social exclusion of the whole family,
including siblings. The cultural community to which the child belongs may have
different responses to disability; the parents may have to cope with additional
negative and stigmatising beliefs about causes of disability as well as
managing the situation within the family.
There is likelihood
for the family to suffer financial implications:
Disabled children are more likely to live in poverty than non-disabled
children. Parents may find it more difficult to maintain full-time employment.
The effects of a seriously ill or
disabled sibling may manifest itself in a variety of ways in other children.
Some children become protective and supportive. Others may experience jealousy,
embarrassment, the sense of neglect, the sense of exploitation (egg having to
take over household chores), guilt or fear. So a young child might stop eating,
whereas the older child may experience wild mood swings or choose to become
isolated.
How and why the impact of a child’s disability or
condition may change over time.
The impact of a child’s disability and condition may change overtime
depending on the individual’s development. This is to say that the
individual's experience of life with their disability will be greatly
influenced by their own personal attributes, their family and social
surroundings and the level of care that they receive which includes support
networks available and multi-professional input like therapists. It is worth
remembering that there may be increased levels of need at key points in that
person's life, such as starting school, going through puberty and leaving the
children's services.
The long-term outlook for these children remains changeable, depending on the nature of the problem. Some children will face a rapid physical decline and early death; others, such as those with cerebral palsy (CP), will take their disability with them into adulthood. But it can also be that after an initial increase in skill between childhood and adolescence, skill level remains fairly stable. Some skills continue to increase; few deteriorate. However, problem behaviour tends to remain the same, at best, if not deteriorate and, at the same time, social impairments show no improvements in the absence of more effort being put in.
The long-term outlook for these children remains changeable, depending on the nature of the problem. Some children will face a rapid physical decline and early death; others, such as those with cerebral palsy (CP), will take their disability with them into adulthood. But it can also be that after an initial increase in skill between childhood and adolescence, skill level remains fairly stable. Some skills continue to increase; few deteriorate. However, problem behaviour tends to remain the same, at best, if not deteriorate and, at the same time, social impairments show no improvements in the absence of more effort being put in.
How theories of loss and
grief relate to the families of children with complex disabilities or condition
The loss of a loved one is a common
experience. Every person will experience loss and traumatic circumstances at
some point in their lives. This experience has the probability to displace a
person from their anticipated life course. Several models and theories have
been attempted to explain the complex process of loss and grief:
1. Freud’s Model of Bereavement
The emphasis in Freud’s ideas on grief is about personal attachment. The theory stresses that grieving individuals are searching for an attachment that has been lost. It describes mourning as detachment from the loved one. Freud defines mourning as a state of depression suggesting that when mourning goes wrong depression escalates.
The process of mourning is viewed as a task to rebuild one’s inner world by experiencing the intense pain of loss that reawakens the loving affect of the lost loved one .It is suggested that in grieving, the bereaved is letting go of multiple attachments that are involved in the formation of a relationship.
2. Kubler-Ross Grief Cycle
The grief cycle model is a useful perspective for understanding our own and other people’s emotional reaction to personal trauma and change, irrespective of the cause. From this model’s perspective, it is important to note that grief is not a linear process. Grief is considered to be fluid and as a result it is believed that most people do not progress through the 5 stages of Grief cycle model in an orderly manner:
The emphasis in Freud’s ideas on grief is about personal attachment. The theory stresses that grieving individuals are searching for an attachment that has been lost. It describes mourning as detachment from the loved one. Freud defines mourning as a state of depression suggesting that when mourning goes wrong depression escalates.
The process of mourning is viewed as a task to rebuild one’s inner world by experiencing the intense pain of loss that reawakens the loving affect of the lost loved one .It is suggested that in grieving, the bereaved is letting go of multiple attachments that are involved in the formation of a relationship.
2. Kubler-Ross Grief Cycle
The grief cycle model is a useful perspective for understanding our own and other people’s emotional reaction to personal trauma and change, irrespective of the cause. From this model’s perspective, it is important to note that grief is not a linear process. Grief is considered to be fluid and as a result it is believed that most people do not progress through the 5 stages of Grief cycle model in an orderly manner:
a. Anger stage: Anger can manifest in different ways.
People dealing with emotional upset can be angry with themselves, and/or with
others, especially those close to them
b. Bargaining stage: Traditionally the bargaining stage
for people facing death can involve attempting to bargain with whatever ‘god’
the person believes in.
c. Depression stage: This stage is characterized by
feelings of sadness and regret, fear, uncertainty. This is an indication that
the person has at least begun to accept the reality of the loss.
d. Acceptance stage: The grieving individual is beginning
to come to terms with their loss. The bereaved make an effort to move on with
life.
3. Bowlby’s Attachment Theory
Bowlby argues that attachments develop early in life and offer security and survival for the individual. It is when these affectional attachments are broken or lost, that individuals experience distress and emotional disturbance such as anxiety, crying and anger.
These emotions are often expressed as mourning. Bowlby suggests that there are four general phases of mourning that include: numbing, yearning and searching, disorganization, reorganization.
4. Other models and theories of grief include Lindemann’s grief work, Rando’s six “R” Model, the Multidimensional Model and Strobe’s Dual Process Model. Though different in approach, each of these models of the grief process does share commonalities.
They all understand grief to involve a painful emotional adjustment which takes time and cannot be hurried along. This appears to be universally true, although each person’s grief experience will be unique. Also each theory helps to present a piece of the larger puzzle in the grief process demonstrating collectively that grief is a complex process that holds both universal characteristics and unique variations.
Bowlby argues that attachments develop early in life and offer security and survival for the individual. It is when these affectional attachments are broken or lost, that individuals experience distress and emotional disturbance such as anxiety, crying and anger.
These emotions are often expressed as mourning. Bowlby suggests that there are four general phases of mourning that include: numbing, yearning and searching, disorganization, reorganization.
4. Other models and theories of grief include Lindemann’s grief work, Rando’s six “R” Model, the Multidimensional Model and Strobe’s Dual Process Model. Though different in approach, each of these models of the grief process does share commonalities.
They all understand grief to involve a painful emotional adjustment which takes time and cannot be hurried along. This appears to be universally true, although each person’s grief experience will be unique. Also each theory helps to present a piece of the larger puzzle in the grief process demonstrating collectively that grief is a complex process that holds both universal characteristics and unique variations.
How early intervention
help the families of children and young people with complex disabilities or
conditions.
Early
intervention is a system of services that helps babies and
toddlers with developmental delays or disabilities. Early intervention
focuses on helping eligible babies and toddlers learn the basic and brand-new
skills that typically develop during the first three years of life, such as:
·
Physical (physical (reaching, rolling, crawling, and walking);
·
cognitive (thinking,
learning, solving problems);
- communication (talking, listening, understanding);
- social/emotional (playing, feeling secure and happy); and
- Self-help (eating, dressing).
Early
intervention involves identifying children and families that may be at risk of
running into difficulties and providing timely and effective support. Early
intervention is about enhancing the capabilities of every parent to provide a
supportive and enriching environment for their children to grow up in. Then the
next generation has the best chance to flourish with the skills to engage in
positive parenting themselves. Its purpose is to improve the life chances of
children and families and benefit society at large, while being cost-effective
Early
intervention covers an array of different sectors including education, health,
and crime. It can take the form of a parenting programme for a pregnant mother
and her partner or a behaviour class for adolescents who are at risk of being
involved in crime. Early intervention is about
working with children and families to help them. It is a collaborative
approach to providing effective support
Types of residential child
care for children and young people with complex disabilities or conditions
Children with complex
disabilities or conditions are cared for in Homes where it is ensured that the
needs of these children are met when they cannot live with their own family.
They are a place for children to develop and grow, as well as provided with
food, shelter, and space for play and leisure in a caring environment. These Children's
Homes look after children with many different needs. This specialist homes can be for short,
medium or long term. These Homes are for example:
Residential schools
care:
A specialist residential school care is a
school in which children generally stay 24 hours per day, 7 days per week, often
called a boarding school.
Child disability
specialist care homes
Children may be placed or taken into care
because they have a mental, developmental, or physical disability, often referred
to as "special needs.
Conditions and disabilities such as Autism, Down syndrome, epilepsy and cerebral palsy (to name a few) may require that children receive
residential professional care. Specialized residential care can be provided for
children with conditions such as anorexia, bulimia, schizophrenia, addiction, or children who are practicing self-harm.
These Homes are for example Learning or physical disability homes, Invasive
heath care crisis care homes and life limited care.
Foster care home.
Children,
including children with special needs, may be cared for in a licensed foster care home. Special training or special facilities may be required to foster a
child who is medically fragile - for example, a child who has a serious medical
condition or is dependent on medical technology such as oxygen support.
How different types of
residential childcare seek to work in partnership with families
Parents are the
most important people in their children’s early lives. Children learn about the
world and their place in it through their conversations, play activities, and
routines with parents and families. Parents can also support children’s
learning in out-of-home settings, such as childminding settings, crèches,
playgroups, pre-schools, and primary schools.
Partnership
involves parents, families and practitioners working together to benefit
children. By working together parents and practitioners can enhance children’s
learning and development. While partnership can benefit all parents and
families, parent/practitioner partnerships can be especially important for
these families.
Each recognises,
respects and values what the other does and says. Partnership involves
responsibility on both sides. A partnership approach between these people is
very important, especially at times of change in children’s lives. These times
might include settling in to a new setting, getting to know a new practitioner,
or getting used to a new baby at home. Other critical times might be when
children experience bereavement, are upset or worried, or feel left out or
different in a negative way.
By working together and sharing information
parents and practitioners can help make these times in children’s lives easier.
Good partnerships are built on trust. Practitioners need to respect the
confidentiality of information they receive about children, while understanding
that confidentiality cannot be guaranteed for example in cases involving child
protection issues. The residential child care in most cases seek to work through family coordinators and child key
workers .In Partnership there are many
different ways in which parents and practitioners can work together:
a).Supporting
learning and development involving families where they meet and participate in planning
and improve the child and young person in this process.
b).Sharing
information they know for the benefit of the child or young person
c).Contributing
their skills which will benefit the understanding of the development of the
child or young person
d).Making
decisions and advocating different approaches and courses of action.
How residential childcare services
work with other agencies and professionals to support children and young people
with complex disabilities or conditions and their families
The residential
child care services have to work together with other agencies and professional
to support the young people. This should be done as required by legislation and
the care home setting. The important legislations are: Making it Happen, Working
together for children, young people and Families (2008), Aiming Higher for
disabled children, better support for Families (2007).
The children
with complex disabilities or conditions need the help of different
professionals and it’s the work of the residential childcare service to
coordinate all these professional on behalf of the children with complex needs and
their families.
The other way of
working with other agencies is using the correct referral routes within the
setting. This is where the teams have to make sure that they work together for
the best interest and outcome for the child and family.
The young people themselves, their families and
significant others, are central partners in all the work of the service. The
units are expected to work, in line with the Care Plan, to encourage their
involvement, ascertain their views and promote partnership working. Also by providing
appropriate hospitality and facilities for family members and others to visit
young people in residence.
Field social workers are also central partners in
all of the service's work. The field social worker holds a care
management/co-ordinating responsibility on behalf of the Department. The
Residential Child Care Service should be committed to:-
- Working closely and co-operatively with field social workers. This entails working together to find shared solutions to problems and difficulties.
- Ensuring that field social workers are kept fully informed on all issues to do with a young person's care, behaviour, wishes and feelings;
- Providing appropriate hospitality and facilities for social workers to visit children in residence;
- Ensuring that professional debate or disagreement is appropriately and openly dealt with, and under no circumstances acted out inappropriately in professional relationships with young people and their families.
Health and
Education services are also key partners. Every Care Plan will set out the
specific arrangements for seeking to meet a young person's health care and
educational needs. In addition, all
young people for whom the service is looking after on a full time basis will
have a Personal Education Plan (PEP) and a Health Action Plan. Drawn up jointly
between the young person, their family, children's social services and
education/ health professionals. The Residential Child Care Services will
utilise and promote joint training opportunities with Education/Schools and
Health colleagues to promote partnership work and good practice. Other partners
with whom the Residential Child Care Service is committed to working closely
and co-operatively include the Police, Probation, Immigration, Legal
Representatives, Youth Offending Team, the Courts, Health Promotion Colleagues,
Youth and Community and Careers Services, Places of Religious Worship,
Voluntary and Charitable Organisations, Community Groups, The LAC Project,
Behavioural Support Team, CAMHS, and Children's Rights Officer. This is
not an exhaustive list and will be continually up-dated when new working
relationships are forged in relation to individual young people
The legal entitlements to
equality of treatment for children and young people with complex disabilities
or conditions.
It
is a legal requirement to equality of treatment for children and young people
with complex disabilities or conditions. This also includes the principles of
working inclusively. Over the last few years there has been
a wealth of legislation in support of enabling children and young people with
complex special educational needs and disabilities to be included within
everyday society, including education. A few examples of legislation that covers these areas are:
Children Act 2004 this sets out the duty to provide effective and accessible services for all children. The Equality Act 2010. This policy sets out the legal responsibilities of public bodies to provide equality of opportunity for all citizens. This has brought together 9 equality laws in to 1 policy. Education Act 1996 – these sets out the responsibility of the school towards the children with special educational needs. It also makes sure that schools provide extra support, resources and equipment to meet the educational needs of these children. Disability Discrimination Act 1995 this policy protects the rights of all who are disabled. It ensures ease of access to all parts of the school and any resources they need to carry out the tasks set. Some additions were made by the Disability Discrimination Act 2005 which gives the schools the duty to produce a Disability Equality Scheme (DES) and an Access Plan. This makes sure that the organisation doesn’t stop disabled people being included in every day school life and to eliminate bullying and unlawful discrimination. Special Educational Needs and Disability Act 200 One of the most important policies as it states that it is unlawful for providers of education to discriminate against pupils with a special need or disability. Race Relations Act 2000 this should promote the positive relationships between different races. Children Act 1989 this tells local authorities including schools that they must provide services according the to the specific needs of children and to ensure their welfare and safety. Human Rights Act 1998 This sets out the rights of all individuals and allows the person to take legal action against authorities when they feel their rights have been affected. And policies and procedures of work place setting.
Children Act 2004 this sets out the duty to provide effective and accessible services for all children. The Equality Act 2010. This policy sets out the legal responsibilities of public bodies to provide equality of opportunity for all citizens. This has brought together 9 equality laws in to 1 policy. Education Act 1996 – these sets out the responsibility of the school towards the children with special educational needs. It also makes sure that schools provide extra support, resources and equipment to meet the educational needs of these children. Disability Discrimination Act 1995 this policy protects the rights of all who are disabled. It ensures ease of access to all parts of the school and any resources they need to carry out the tasks set. Some additions were made by the Disability Discrimination Act 2005 which gives the schools the duty to produce a Disability Equality Scheme (DES) and an Access Plan. This makes sure that the organisation doesn’t stop disabled people being included in every day school life and to eliminate bullying and unlawful discrimination. Special Educational Needs and Disability Act 200 One of the most important policies as it states that it is unlawful for providers of education to discriminate against pupils with a special need or disability. Race Relations Act 2000 this should promote the positive relationships between different races. Children Act 1989 this tells local authorities including schools that they must provide services according the to the specific needs of children and to ensure their welfare and safety. Human Rights Act 1998 This sets out the rights of all individuals and allows the person to take legal action against authorities when they feel their rights have been affected. And policies and procedures of work place setting.
A crude summary of the effects of the legislation is:
Children and parents must be heard
and given equal weighting to the professionals working with the children.
- Parents and schools can request a statutory assessment of SEN.
- Parents have a right of appeal.
- Parents have a right for their child to be educated within mainstream settings.
- Children with SEN and/or disabilities have a right to equal access of educational provision including environmental and curriculum modifications to enable this.
- Children must not be discriminated against because of their SEN/disability; hence reasonable adjustments must be made for their SEN/disability – including school admissions.
- Children and parents have a right to privacy and any data regarding parents and children must be treated with the utmost confidentiality and therefore not shared without permission.
- Access arrangements to enable individuals with SEN and/or disability to access exams come under the rights to access education through disability discrimination law.
Parents have a right to view all
data and information held on file about them and their child
The importance of the
child-led model of provision
The benefits of a child or young person led provision are that
the child has a say in what happens to them and the type of support they
achieve. It is empowering for them and their families. Child and young person
at the centre it is important that the child is viewed as a whole person.
Everything that a practitioner does must meet the needs of the child.
The child led provision should describe in what ways the child
is involved in their care. How staff shows that they focus on the whole child;
rather than on the child's needs and impairment, the areas the setting could
change their focus and encourage the participation of disabled children and
young people.
It is important that a setting does not just do things for the
child. It does not allow the child to learn and develop. It can lead to a child
becoming frustrated; feeling aggressive or withdrawn.
It is important to allow the child to choose to take part; choose to do activities. If the disability is great; it may be that the child can make limited choices; but it is important that that choice available. Concepts and principles of partnership with parents and carers. The child led provision. Requires providers to ensure a balance of child-initiated and adult-led play-based activities. Providers should use their judgement and their knowledge of the children in their care in deciding what the balance should be. When a child engages in a self chosen pursuit, this is child initiated activity
It is important to allow the child to choose to take part; choose to do activities. If the disability is great; it may be that the child can make limited choices; but it is important that that choice available. Concepts and principles of partnership with parents and carers. The child led provision. Requires providers to ensure a balance of child-initiated and adult-led play-based activities. Providers should use their judgement and their knowledge of the children in their care in deciding what the balance should be. When a child engages in a self chosen pursuit, this is child initiated activity
How the social model and
medical model of disability affect provision
There are a number of ‘models’ of disability
which have been defined over the last few years. The two most frequently
mentioned are the ‘social’ and the ‘medical’ models of disability. The medical
model of disability views disability as a ‘problem’ that belongs to the
disabled individual. It is not seen as an issue to concern anyone other than
the individual affected. For example, if
a wheelchair using student is unable to get into a building because of some
steps, the medical model would suggest that this is because of the wheelchair,
rather than the steps.
The social model of disability, in contrast,
would see the steps as the disabling barrier. This model draws on the idea that
it is society that disables people, through designing everything to meet the
needs of the majority of people who are not disabled. There is a recognition
within the social model that there is a great deal that society can do to
reduce, and ultimately remove, some of these disabling barriers, and that this
task is the responsibility of society, rather than the disabled person.
This medical model approach is based on a
belief that the difficulties associated with the disability should be borne
wholly by the disabled person, and that the disabled person should make extra effort
to ensure that they do not inconvenience anyone else.
The social model is more inclusive in approach.
Pro-active thought is given to how disabled people can participate in
activities on an equal footing with non-disabled people. Certain adjustments
are made, even where this involves time or money, to ensure that disabled
people are not excluded. The onus is on the organiser of the event or activity
to make sure that their activity is accessible.
How different cultural
views of disability can impact on practice
Different
cultures usually have different approaches to life and beliefs and the
upbringing of their child. Culture is a pattern of ideas, customs and behaviours shared by
a particular people or society. It is active, yet stable. Health is a cultural idea
in that culture frames and shapes how we perceive, experience and manage health
and illness. When working with families from various ethnic, cultural and
linguistic backgrounds, best practice involves cross-cultural competence. There
are 3 basic steps toward achieving culturally competent care, these are:
1. Being aware of your own
beliefs and values, and clarifying these when needed.
2. Obtaining information on
the culture and background of newcomer patients.
3. Engaging and working with
newcomer patients, using approaches that are sensitive, receptive and
responsive to their cultural perspectives.
Different cultures have different views of the causes of
developmental disabilities. ‘Blame’ for a disability may be placed on the
mother or both parents, or the child’s condition may be considered an “act of
God”.
Culture influences key
aspects of and approaches to treatment for developmental disabilities,
including:
·
whether to seek help
·
what treatments to use
·
the availability of resources
·
the expectations parents have of, and for, their child
·
relationships between families and care professionals
Families from cultures
with a more collectivist orientation may bring a contrasting approach to
treatment plans for a child or youth with a disability. They might focus on a
treatment that facilitates family and community activities rather than
individual competence and autonomy.
Never make assumptions
about the needs or wants of a newcomer family based on their ethnic background
or cultural practices. There are always differences among and within cultural
groups. Some families choose to keep certain traditional practices or beliefs
while adopting other culture-based beliefs from their current environment
Health care professionals
should learn about and be mindful of the hierarchy of family and society in the
different cultural groups they see in practice. There may be tensions between
Western service delivery models and traditions that value independence, collectivism
and close family relationships. Health professionals should be sensitive to
these issues. The parents of children with developmental disabilities also
report a variety of barriers
to service and treatment,
including:
·
lack of accurate information about available services
·
confusion about medical care and the purpose of treatment
·
lack of fluency in English and differences in religious beliefs
·
lack of transportation
·
concerns about the financial impact of treatment on their other
children
·
Concern over stigmatization and discrimination.
The importance of
maximising active participation of children and young people with complex
disabilities or conditions in their own care and day to day living
Opportunities
for children and young people to participate in decisions and issues that
affect them have increased significantly. However, this is not the case for
disabled children and young people, particularly those with complex needs and communication
impairments, despite them being disproportionate users of support services in
health, social care and education settings.
Active
participation of children and young people with complex disabilities helps in
their empowerment and Promotion of
their individual rights. Disabled children and young people have the same rights as non-disabled children and
young people to participate in decisions and issues that affect them. This is
outlined in both the UN Convention on the Rights of the Child (UNCRC) and in the UN Convention on the Rights of Persons with
Disabilities
(UNCRPD). Despite this, disabled children and young people continue to face significant barriers and challenges to
participation.
Giving a choice: the
importance of active participation of children and young people in decisions
affecting their lives is you can find out what the child or family actually
want or need.
Removing barriers of communication:
It’s very important to listen to their views and communicate with parents and
respect their points of view you need to communicate well with children and
take into account that young children may use non verbal communication.
It allows the children to make the
choice by themselves building up confidence, self-esteem and social skills.
When children and young people are given choices on what activity they would
like to do they are making a decision which can help them become confident. Every
week we let the children choose which part of the school they would like to go
to for GOLDEN TIME they get to make the decision on playing at nursery, taking
part in construction in class 2, clay modelling in class 1, drawing and
colouring in the hall or small world in class R.
develop independence:
to support children and young people according to age, needs and abilities to
make personal choices and experiences you need to understand the child’s
individual needs and capabilities for example a child in the setting who may
want to do a certain activity may not be safe for another child to do due to
their ability so that activity would need to be adapted to suit the child’s
needs. We provide plenty of opportunities to children to make choices to help
them gain independence and confidence.
Ways in which children and young people with complex disabilities or conditions can be encouraged to participate in the daily activities of the setting
Ways in which children and young people with complex disabilities or conditions can be encouraged to participate in the daily activities of the setting
The
first thing that should be done is to make sure that there are no any barriers
which will hinder the children or young people from participating. These
barriers should be removed. The most notable and common barriers are:
Physical barriers: Helping children and
young people to be involved in the design of activities or play, space is an
important way of encouraging them to be more physically active. Children and
young people's opportunities to be physically active can be affected by
environmental, economic and social factors and perceptions about safety and
accessibility. Weather conditions –The
children’s perception of what type of conditions make it suitable to be outside
– can also affect the opportunities they take
Effective communication: Many children who are
disabled highlight social issues, rather than their impairment, as a barrier to
participation. If they are encouraged to communicate their preferences, changes
can be made to the physical environment, activities and the attitudes of others
to help them to participate.
Person centred plans; the other ways children
with disabilities or conditions can be encouraged to participate in activities
is through person centred plans. Person-centred planning provides a way to consider
important developments in people’s lives as part of a regular overall review of
what has been achieved and what might be possible in the future. Individual
preferences and the involvement of the person concerned in deciding what
outcomes to pursue are important.
Peer interaction: Practitioners can
encourage and nurture positive peer interaction through play and other physical
activity opportunities
Activity Support Plans. These
provide a way to organise household tasks, personal self-care, hobbies, social
arrangements and other activities which individuals need or want to do each day
and to work out the availability of support so that activities can be
accomplished successfully. People with learning disabilities need support to
participate .Having a learning disability often results in a lack of
independence. People with a learning disability cannot arrange all they might
want or need to do for themselves. The greater the severity of disability, the
larger the knowledge or skills gap becomes. Good support can help to fill this
gap. This means planning for the best use of time and giving people as much
support as they need to get things done for them. With sufficient planning and
support, everybody can participate in activities and have a full day regardless
of their disability. They can contribute even if they haven’t got all the
skills needed for a particular activity they can take on their share of responsibility
and be involved in things they like to do and make informed choices.
How children and young
people with complex disabilities or conditions can be encouraged to contribute
to shaping future services
The abilities to understand other people and
to express what one wants are very important. It is therefore important that
children and young people with disabilities or conditions should be encouraged
to participate in the services they receive. Specific planning is often
required for people with severe learning disabilities and limited language if
their communication needs are to be met. This will give them the opportunity to
participate in their reviews.
Ways of
supporting people to express what they want should be brought into Active
Support. These can lead to encouraging
participation of children and young people in making choices and decision in
the settings. The organisations should always review the process of
participation (that is what they are doing now and the outcomes for children
and young people directly involved in participation practice. The organisations
should also review the outcomes of participation that is what changed or
improved. The services should be able to show tools and knowledge about how
services and organisations can review the outcomes of participation. The services
which are child- centred are more likely to achieve the goal of supporting the
children and young people’s needs in their setting.
Types of support used to
enable children and young people with complex disabilities or conditions to
express their views, preferences and aspirations.
Every child,
young person, parent or carer is a member of society. Organisations provide
services for people living in that community or society. So it’s important that
they are consulted and involved in the provision of services. Services need to
be inclusive, relevant, and cost effective, meet their user’s needs, improve
things, and be accessible. You will be able to check all these things by involving
children and young people & their families.
Since the
passing of the Children Act in 2004, Particular attention is given to how
services are implementing the five Every Child Matters outcomes: Being Healthy:
Staying Safe: Enjoying and Achieving; Making a Positive Contribution; Achieving
Economic Well Being. There has been a growing emphasis on services actively
involving children and young people in decision making, young people and
parents/carers in the commissioning, development and evaluation of services
especially in care planning and reviews.
Children and
young people with complex disabilities or conditions should be supported by use
of electronic aids, PECS to communicate their needs and views. Where necessary,
children and young people with complex disabilities or conditions can use
Advocacy services to express their preferences.
Ways to engage with
children and young people with complex disabilities or conditions focusing on
strengths and needs- building resilience.
This should take
holistic approach. A holistic view means that we
are interested in engaging and developing the whole person. You can think of
this as different levels, physical, emotional, mental and spiritual. It’s the
concept that the human being is multi-dimensional. In order to achieve
this, Parents, carers and families play a vital part in the development of the
child’s individual learning plan. Parents and carers are the experts and their
child’s primary educator.
By using this
individual development plan, coupled with equality of opportunity, the child
will be easily engaged and encouraged to participate to meet his full
potential. And in this process the child or young person will build resilience.
This will ensure that a service is developed
reflecting local needs and hopes and supports families to access the service.
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