To What Extent are Families of Children with Severe Intellectual and Developmental Disabilities Adequately Supported by Services and Society
The American Association of Mental Retardation has coined the term intellectual and developmental disabilities to encompass mental retardation, cerebral palsy, epilepsy, autism and traumatic brain injury. In the United States, the terminology was changed in order to bring the definition closer to that of United Kingdom and other parts of the world. Intellectual and developmental disabilities differ in the sense that developmental disabilities are physical manifestations that can be moderate to severe in nature and also in the sense that intellectual disabilities can be caused due to negative social factors. Thus, intellectual and developmental disability is an all encompassing terminology.
Common conditions of intellectual developmental disabilities are mental retardation, Down syndrome, and autism. A child whose intelligence quotient scores below 70 and experiences delay in adaptive behaviour and daily living skills has a condition called mental retardation. A child whose intelligence quotient scores below 70 and experiences delay in adaptive behaviour and daily living skills has a condition called mental retardation. It has been defined by AAMR as
A condition of arrested or incomplete development of the mind, which is especially characterised by impairment of skills, manifested during the developmental period, contributing to the level of intelligence i.e. cognitive, language, motor and social abilities (WHO, 1992).
Early intervention and special education programs may address this condition.
On the other hand, Down syndrome occurs when a defect is detected in a persons chromosomes. This condition results in 47 chromosomes instead of 46, and an additional copy of chromosome 21. It may delay physical development and intellectual attainment to an individual. However, patients under this condition can live independently.
Another common intellectual developmental disability mostly among children is autism. Most children under this condition are associated with low IQ. Impairment in communication and social interactions is more likely to affect a childs ability to function well in daily living. . It may delay physical development and intellectual attainment to an individual. However, patients under this condition can live independently. Physical defects at birth may be detected as signs of this condition and may include low muscle tone, flat nose, small mouth and ears, slanted eyes, short arms, and a large head.
The causes of severe IDDS have been widely identified as genetic syndrome several technologies have been used in order to find the cause to IDDS through magnetic resonance imaging and fluorescence in situ hybridization cytogenetic assays. The other causes to severe IDDS have been found to be Chromosomal including Down Syndrome four to twenty eight percent, Fragile X two to six percent, Central nervous systems anomalies (7 to 17 percent), environmental causes (15 to 15 percent), malformation or genetic syndrome (10 to 20 percent and around 30 to 50 percent of the times the causes still remain unknown).
Social Skills of Children with IDDS
IDDS is characterized by an inability to participate and be accepted in society.
Matson states that children with IDDS have problems in adapting to a social situation, and they are also affected by impaired cognitive processing. It has also been noted by Guralnick and Weinhouse that children with IDDS initiate fewer social interactions. In a survey, it was found that the level of social maladjustment was in direct correlation with the severity of the cognitive development and psychiatric disorders.
Abells et al. have stressed on the need for children with IDDS to improve on their social interaction skills. They found that children with IDDS have problems befriending their peers but were enthusiastic about participating in sports and other activities. Children with severe developmental disabilities are known to want friends but are unable to do so as they cannot conform to social expectations. Their aggressive physical behaviour scare their peers away, and their repetitive behaviour comes across as bizarre and scary to their peers. Guralnick and Groom also found that children with developmental disabilities spent most of their time playing on their own and less than twelve percent involved themselves in social play.
Thus, there is an urgent requirement for schemes that encourage social relationships between, children with IDDS and their non-disabled peers. This would make children with IDDS more confident in interacting with the outside world. There is also a need for services that will help the child with IDDS to cope with emotional and behavioural difficulties as compared to non-disabled children in the UK. It is up to the parents and teachers of children with IDDS to ensure that interaction with their non-disabled peers is maintained even after school hours. It has been medically proven that children with IDDS do better academically if they are kept in the company of non-disabled peers.
However, in a study that was conducted across ten countries, it was believed that most parents had trepidations in including their children in the same class as a child with IDDS as they believe that it would impede the learning of non-disabled children, it would create safety risks in the classroom as children with IDDS are comparatively more aggressive and there would be disciplinary problems in the classroom.
Behaviour Analysis
Children with IDDS are reported to have problems with their adaptive behaviour which means age appropriate independence in ones personal and social life and have limited ability to function in their daily life, i.e., self care, independent living, communication and interpersonal skills. It has been noted by UK researchers that most children with IDDS have mental problems, and approximately 36 percent of these children also suffer from mental disabilities and psycho pathology issues. In fact as adults, people with IDDS have social problems and 30 percent of whom are unable to make any friends. Thus, encouraging pro social behaviour becomes a primary objective for children with IDDS.
To identify intellectual developmental disabilities in children, behaviour analysis is needed. Behaviour analysis is the science concerned with what people do and say, and the behaviour of animals. This is a process to help understand, explain, describe, and predict behaviour. It differs from most psychological attempts to understand behaviour which are usually done with assumed entities that do not exist in the natural world.
Behaviour analysis has been recommended by Murdoch and Barker in order to improve the behavioural patterns of children with IDDS. They recommend a molecular approach to behavioural change as it focuses on the primary behavioural challenges of the child and then efforts are made to change the environment which alleviates a particular behaviour pattern.
Alan Carr claims that for children with intellectual and developmental disabilities, it is important that there are periodic interventions made with an applied behavioural analysis framework. Using behavioural analysis by assessing the antecedents and the consequences of the challenging behaviour as well as encouraging pro-social behaviour of child with IDDS is the primary focus of behavioural therapy. Carr 2002 goes on to state that children with IDDS require specialist supervision for proactive and suppressive intervention of challenging behaviour.
Services Required By Children with Severe IDDS
Individuals with IDDS need help with personal care, grooming, personal hygiene, and other personal needs they may also need assistance in their daily life when it comes to finances, health, and safety precautions. Children with severe IDDS often have to have a constant carer to communicate for them and to safeguard them from danger. The needs of a child with severe IDDS are therefore more than even those of a child with mild IDDS. Hence, the services to them and their families are more urgently required.
Children with IDDS require constant vigil and support from health care providers these services are provided after measuring the degree of the severity of the intellectual and developmental disabilities suffered by the child. It is recommended that intervention and support is provided at an early age for the child. These support services include providing a child with nutrition assistance and assistance in terms of the use of technological devices and technological services.
To help increase childs independence, special advice and adaptations to the house andor special equipment may be available as well as advice about benefits and other financial assistance. Extra help inside the home include some counselling advice and putting the parents in touch with organizations voluntarily offering aide and other agencies that offer support to family and children with mental or intellectual problems.
There are a variety of service models available for transition for young people with intellectual disabilities in the UK. The appointment of transition champions is general in each service, and it serves as a common reference point nationwide. However, service still depends on how it is structured and according to experts availability. Geographical considerations are also considered. Children with severe intellectual developmental disabilities need life long care, and although most families try to provide these services, they have to be eventually institutionalized.
The child is also in need of audio logical assistance and eye specialists. Children with IDDS require psychiatric services, family counselling, and coordination between various service providers. Thus, transportation services, social work services, and coordination services are also required. The child may also need special instruction at school. Therefore, a number of service providers have to work in tandem to provide support to a child with severe intellectual and developmental disabilities.
There is a possibility that children with severe IDDS may also need personalised and specialised healthcare sometimes for months. Under these circumstances, there will be an additional need for high staffing ratios, occupational therapy, group therapy, specialized pharmacotherapy, psycho education, enhanced structure and rapid access to specialized medical and diagnostic services.
The results of the Fourth National Survey in 2007 on the state of services for children with intellectual disabilities in the United Kingdom showed that teenage boys with autism comprise the group children waiting the longest for a service. Some services have been made accessible to families and children belonging to the ethnic minority. Since family-based short breaks were rapidly changing along with the continuous increase in contract carer services, the challenge for short breaks are more available and responsive to the needs of children and families. Appropriate extra help needed by children with disabilities are widely available, if not all but in most schools. The head teacher thus works closely with the parents and the one who identifies the special educational needs of the child. It is also the head teacher who is responsible for making the best possible provisions in school.
There are a number of community efforts being made in order to facilitate the acceptance of people with IDDS into the society these efforts include modification of the education curriculum and equal opportunities legislation. Community services also include facilities in the form of childcare, kindergartens, schools, transports, libraries and recreational facilities and other services which are given to non-disabled children in UK.
Services Provided to Non Disabled Children and Children with IDDS
There are statutory services that have to be provided by right to a child living in London, and these services include the right to health, education and social services. An example of such services would be the right to school in the vicinity of the locality where the child is residing. Other community services that are given to children in UK are Crches, day nurseries, residential care, after school clubs, pre-schools, childminders, workplace nurseries, schools, support groups, holiday play schemes and respite care. Families of children with IDDS need services over and above those which are given to their non-disabled peers, as they undergo a lot of stress and frustration while dealing with the relevant authorities in providing care for their child with IDDS. They are in the need of emotional, financial, and practical support which can be listed as follows support groups, independent counselling, early intervention and skill development of the child, respite care, child care, play and supervised leisure facilities in and out of school hours, appropriate housing and aids to daily living.
They are also in need of financial support in the form of financial help packages which are tailored according to the expenses that have to borne by them in order to raise a child with severe IDDS. According to information provided by Kendall and Knapp, the total operating income of non-disabled and children and their families suggests that residential, domiciliary, day care, and representation services are the primary services which are required by the families of normal children, and it was found that the government made specific contributions towards the family incomes in order to ensure the proper care of the child. The table below shows that the government makes the most contribution towards domiciliary care which is almost 82 percent of the family expenditure towards these requirements. Thus, it can be inferred that the UK government has been more than successful about the community contribution made towards the nurturing of their child.
ServicePercentage contribution from governmentResidential55.2Domiciliary82.9Day Care4.6Representation38.2Multiple services53.0All other services43.6However, the cost of bringing up a child with IDDS is three times the cost of bringing up a normal child. It has also been found that carers of children with IDDS are comparatively more stressed than families of non-disabled children. Families of children with disabilities live in poorer economic conditions and are seldom home owners. In a study conducted by Beresford and Rhodes, it was found that families with non-disabled children have comparatively better living conditions. Although the consensus shows that families of children with IDDS are fairly satisfied by their living conditions, community services will be required in order to improve their standard of living. According to a survey conducted by ECHS, families of children with IDDS need more urgent repair work and modifications to their housing situation.
In a survey that was done in the year of a sample size of 3000 families the following results were found
Problem areaProportion of families
reporting difficultiesFamily space (space to play space apart from other family members)55Functional rooms (kitchen toilet bathroom) difficult to use42Only one toilet andor bathroom41Lack of space for storage of equipment38Location38Access aroundand in and out ofthe home 33Lack of downstairs toilet andor bathing facilities33Housing condition27Lack of space to use equipment and carry out therapies21Inadequate facilities to meet carer needs (e.g. lifting toileting bathing)21Safety inside the home3(EDCM, 2008, p.4)
Thus, it can be concluded that eighty six percent of the families were suffering from accommodating a disabled child in their house, out of which fifty six percent of the families complained that they did not have adequate space f their disabled child. Which increased the risk factors for the child as they had several accidents while accessing and using the functional rooms in their house
Even though support services and childcare are easily accessible to non-disabled children, there have been problems for children with IDDS in accessibility to such services, especially in the area of transportation and child care. There are some programs that refuse admission to children with IDDS, claiming non-qualified staff for handling children with IDDS.
This is because tensions have been noticed between the developments of services for IDDS and supporting access for general services. There have been circumstances wherein parents of non-disabled children have felt that their needs, especially in the healthcare sector, are not being met completely, as more time is being provided towards the development of specialist services for children with IDDS. There were also complaints that day care services in certain localities were shut down citing the development of speciality services, while community members believe that in actuality, costs were being cut due to budgetary constraints in the borough.
Middleton has openly stated that the reason behind the exclusion of children with IDDS from the mainstream is because there is an over-riding fear that the non-disabled children will be excluded from necessary services and resources, and the inclusion of children with IDDS would disadvantage the majority of other children and non-disabled children would be held back. Thus, there is a tendency for families of children with IDDS to not being given equal opportunity, access to welfare and healthcare services. Middleton goes on to state that children with IDDS are deliberately denied their rights so that non-disabled children do not suffer any discomfort in accessing services.
There is a wide gap between the services provided by the concerned professionals, the care required by children with severe intellectual and developmental disabilities, and the actual care that is being given by the providers.
Children with severe IDDS are more vulnerable to abuse than their non-disabled peers. However, no efforts have been made to put these children on child protection registers where 158,000 non-disabled children were registered and only 18,000 children with disabilities were registered with the government. It was also found that in residential care, children with disabilities are kept for a longer period of time in residential care than in foster care when compared to non-disabled children. There is a serious suspicion that children with IDDS are not being put on care orders.
Disparities in Services Provided
The type of support that is given to a child with IDDS varies with his age and the statutory edicts of the government. The quality of services provided to children is also affected by the availability of support services in the location as well as the presence of voluntary organizations in the area. There is a wide gap between the services provided by the concerned professionals, the care required by children with severe intellectual and developmental disabilities, and the actual care that is being given by the providers.
In the US, Heinz reported that over a fifth of the children with IDDS were not given care by specialty service doctors and had problems getting referrals to other doctors or actually finding doctors who had the appropriate qualification to care for the childs specific needs. There have been numerous complaints about the lack of mental health services provided to children with IDDS, as well as a dissatisfaction of the parents with their primary physician in their ability to introduce them to other parents who have children with IDDS, which impedes the creation of a self support group in America, and there is a dissatisfaction about the homogeneity of services provided to children with IDD.
It has been found that children with IDDS also have severe psychological disorders. According to Rutter et al (1970), in an Isle of Wight study, it was found that children with an IQ below 70 were reported to have psychological disorders by their teachers and parents. Apprehension has also been felt among the guardians of IDDS children in Scotland as it has been reported that only 21 percent of the people with IDDS have been resettled.
Smith et al. described the current services being provided by educationalists, social workers, and healthcare professionals as being in a state of improvement, with analysis being done on the introduction of new services and maintenance, improvement and closure of existing services. There was an absence of detailed data that was required in order to assess the efficacy of the services provided by the primary healthcare professionals report. It was also found that 89 percent of severely mentally handicapped children have at least one unmet need.
A Mental Health Foundation has openly complained about the quality and quantity of services provided to families of children with IDDS. They stated that due to non-implemental advice, lack of resources to support home treatment, they were highly dissatisfied with the advice provided to carers of children with IDDS. Most of them reported no communication or non-usable advice, or very little professional advice was of any use at all.
In 2002, a survey by the Fostering Network has shown in United Kingdom. 7,800 more foster carers are urgently and desperately needed to ensure children are given an appropriate placement. This survey involved a total of 128 local authorities which confirmed the results. Gerri McAndrew, the executive director of Fostering Network, said regardless of the numbers, each child deserves to live with a foster carer, who is carefully chosen to meet his or her specific needs, according to location, culture, lifestyle and language. This marked the launch of fostering fortnight that attracted more foster carers. During that time, around 45,000 children and young people were already living with 37,000 foster families in the UK.
It has been found that people with severe IDDS have complex behaviour problems which cannot be handled by normal psychiatrists and psychologists. These needs are deemed to have been hugely unmet according to a survey conducted by Bouras and Holt 2001, who claim that no attempt was made to negotiate service issues between mental health and social service providers.
Families of Children with IDDS
Children with disabilities deserve the same care and attention as other children. They also have the same rights as normal children especially to education and community services. Their special conditions must be assured that they grow up fully equipped with all the support and the same opportunities as other children and eventually live a fulfilling life.
In the UK, Malin, Race, and Jones assert that the parents and families of children with severe IDDS play a larger role in providing support to the child, which has been recognized by policy makers and professionals who are now providing support to families as well, in the form of medical, social and education services and counselling sessions for the family on how to nurture a child with IDDS.
Carers are provided with the right assistance from the NHS social services. Other resources are made available to them in order to aid the caring of a child with severe IDDS. Support and services are provided based on the individual needs of a child. These services can be arranged between the parents and the social worker in order to decide which are the most appropriate services or programs for the child. Some services differ in other areas and countries. One of the services or family support that should be offered could be any help to arrange day care for children under school age even outside school hours and during school holidays.
McGill et al. have reported that there are inadequate professional services for mentally disabled children. Most parents of children with IDDS have also found that respite services are the most urgently needed services by parents. Parents and children could then go for an overnight stay or other short stays so that they may have a break from daily normal chores.
There are, however, additional expenditures for families. It has been estimated that families spend 5,445 pounds annually out of their own pocket in caring for the IDDS child. It has been noted that families with children having IDDS have notably lesser chances of gainful employment as they have to adjust their lives around the needs of the child with severe IDDS.
According to the study of Eric Emerson from the Institute for Health Research in Lancaster University, those supporting a child with IDDS are mostly economically disadvantaged as compared to families supporting a child without ID. Mothers of children with ID reported that the difficulties experienced by their children have a greater social and psychological impact on their child. These difficulties are brought about by a stressful life event, poverty, and unhealthy family functioning among others that greatly affected their children with IDDS. These results imply that there is a need to alleviate poverty among the families and children with IDDS as well as improve models of understanding and intervention.
People with IDDS have problems caring for themselves children with severe IDDS either live with their carers or in institutions as they are unable to care for themselves all their lives. The table below presents the findings of a study that was conducted in 2008. It was concluded that most of the people with IDDS spent most of their lives being cared for by their parents and families.
It was also found that most of the professional care is provided by social workers and by voluntary organisations. People are in need of specialist doctors as has been stated earlier, most of the mentally handicapped people are in need of personal care which is being paid for by direct payments. Most of the parents feel that they are in need of additional financial assistance, though the study found that the DLA Allowance and Job seekers allowance were found to be adequate by the sample of mentally handicapped people who were researched.
Circumstances and support for the RITE study participants (n30).Area of support.
Where they are living Typically single living in adapted domestic accommodation. 230 live with partners, 1730 live with parents and siblings, 830 living alone or with personal assistant. Social services or Disabled Facilities Grant and Family Resources Fund housing adaptations. Social care in previous 3 months Social worker 830. Connexions 430. Respite care 230. Other social care 230. Voluntary organisations 330. 1030 were fairly or completed satisfied with transition from childrens to adult services Health care in previous 3 months GP 1830. Practice nurse 530 Physiotherapist 1430. Occupational therapist 630. Specialist doctor 1130. Clinical engineer 430. Other services used by only one or two people.
830 were fairly or completed satisfied with transition from paediatric to adult services Personal care 2630 require personal assistance 1130 for 247. Seven receive between 14 and 128 hours per week.
Direct Payments 1230. Independent Living Fund 830. Family members provide support for 1830. Social security benefits SDA under 40s rate (n9), Disability Living Allowance (DLA) Care highest rate (17), middle (6), and low (2). DLA Mobility higher (23) and lower (1) rate. Income Support or Jobseekers Allowance (11) with Disability (4) or Severe Disability (7) premiums. Disabled tax credit (1)
According to McGill et al., there have been mixed reactions about the professional help being provided to parents of children with severe IDDS. Qureshi has reported that twenty six percent reported no professional advice, sixty one percent found the professional advice non-helpful, and in all eight two percent found the professional advice to be non helpful.
Parental satisfaction ratings (n 66) on scale from 1 (strongly disagree that satisfied) to 7 (strongly agree that satisfied)
Satisfaction withMean (SD)Percentage satisfied(ratings of 5,6,7)Percentage dissatisfied (ratings of 1,2,3)
General support
2.8
1.8)
20
68
Medical help for challenging behaviour
2.7
(1.8)
19
66
Psychological advice regarding challenging behaviour
2.9
(1.8)
19
66
Help regarding sondaughters communication skills
3.5
(2.1)
30
53
Respite care3.4
(2.2)
36
52Other help regarding challenging behaviour
2.8
(1.7)
21
59(McGill et.al, 2006, pp161)
A study conducted by McGill et al (2005) also shed further light upon the needs of parents with IDDS and the extent to which these needs are being satisfied. From the table, it can be observed that there is an overall dissatisfaction from the services that are being provided by the NHS and other professionals in caring for children with IDDS. It has been found that 66 percent of people were not happy with the medical help that was being given to mentally handicapped children, and more than 68 percent of the samples displayed dissatisfaction with the overall services that are required by the parents to care for mentally handicapped children. Another factor of concern was assistance and psychological advice for the challenging behaviour of their medically handicapped child. Other important services, i.e., respite care, and auditory skills, were rated as more or less satisfactory by the parents of children with IDDS.
Recommendations for Possible Improvements
According to the Mansell Report (UK Department of Health, 1993), there is an urgent need to develop facilities and services for people with IDDS, and it is important to develop and expand the capacity of current community services to accommodate the challenges of people with IDDS which require the cohesive participation and cooperation of the healthcare provider and the social services sector. General practitioners also must be trained in order to provide service to children with severe IDDS. Most practitioners are unable to deal with the behavioural problems of children with IDDS especially in the field or oral care.
Middleton has also recommended the creation of an inclusive welfare system where children with IDDS are not denied their rights in fact she has recommended that there has to be changes in directing education to achieve learning, health and welfare services to deal with real medical or social problems.
It is also recommended that the carers of children with severe IDDS are given intensive support services in order to relieve their stress and enhance the quality of their lives. Singer et al. reported that the mothers of children with IDDS who received intensive support services (behaviour management classes, voluntary assistance in providing activities for the child) as compared to regular day care management services, showed an improvement in their depression and anxiety levels.
Joyce et al. has also requested that families of children with severe IDDS be given regular respite care as it has a positive impact upon family relations, social activities, emotional and physical strain on parents, and it also put a stop to plans on sending the child into institutionalised care.
Studies have shown that children with severe IDDS have benefited by early intervention and it would be advisable that their carers take requisite steps to ensure that support and professional services are provided to their child at an early age in order to reduce the chances of the child suffering from behavioural and mental disorders as he or she grows older.
Efforts should also be made to include children with IDDS into schools where it was found by Bunch and Valeo that it is easier for them to develop friendships with other children who have disabilities and are non-disabled. They also suffered less abusive behaviour and greater advocacy from children without IDDS. However, children with severe IDDS still receive their education in special schools.
In order to alleviate the poverty that most families with children who are suffering IDDS, the following suggestions have been made, HM Revenue and Customs should increase the upper limit of child care costs under Working Tax Credits for families with disabled children to 300 pounds per week The government should also introduce flexible working arrangements for families of children with IDDS and it is also suggested that DWP should consider awarding DLA for longer periods where their level of need increases with their age
Conclusion
There are additional services that are required by children with severe IDDS, and these include corrective, supportive and behavioural services. Nehring has also stated that there is a tendency for children with IDDS to also have behavioural and mental disorders thus, specialised services in these fields are also required. There is an immediate need for improving support to families of children with IDDS, in the absence of which the families of children with severe IDDS are opting to get their children into residential placements, so that better care will be taken of their child.
The parents of children with severe IDDS have cited challenging behaviour, lack of community support, and drainage of finances which made them finally put their child with severe IDDS into residential placements. Therefore, it has become necessary that the government of UK ensure that the statutory rights of children with severe IDDS are implemented as it can by judged from the findings that support services being provided to children with severe IDDS and their families has fallen much below standard and is in need of immediate improvement.
As children with severe IDDS usually cannot join inclusive education and are almost always dependent on carers and are finally admitted into institutionalised care, Wolraich et al., recommends that in order to improve the standard of living for children with severe disabilities, there has to be coordination between the medical, psychiatric, educational and behavioural professionals.
In the US, efforts are being made by the government to provide support to the families of children with severe IDDS, and also make them eligible for other educational and healthcare programs. They are now also eligible for additional support systems which earlier were only available if the child was institutionalised. Huge community-based support programmes are available to children with severe IDDS along with these services. Many states have also invested in institutional settings, i.e., state facilities, nursing homes, and intermediate care facilities. A similar strategy can be adopted in the UK, and various programmes can be undertaken that make the lives of families of children with IDDS less stressful and more meaningful.
In the UK, difficulties arise in implementation of policies because no one agency takes the onus of implementing a well-designed strategy in order to improve the lives of people with IDDS. There is no clear statement that relegates responsibility of implementation with any one organisation. Thus, none of the organisations are prepared to take the onus of ensuring that these services are available in a timely manner to children with IDDS.
The Child and Mental Health Services do make an effort to provide services to children with severe IDDS, but their efforts usually falls short of expected standards and increases the stress and the frustration of the families of children with IDDS. Several initiatives have been made by the community, including Every Child Matters programme by the Department of Health and the Do Once and Share Project have all made suggestions in order to improve the lives of children with IDDS.
However, there have been service gaps as the CAMHS departments, who were supposed to use the funds for children IDDS, used the resources for other initiatives, or the funding fell short of making any serious impact on the needs for a child with IDDS. According to Berney, 2000 several models have been introduced in order to improve the service being provided to children with IDDS. These models are based on the following initiatives Providing lifetime service to people with IDDS, stand- alone CAMHS services and CAMHS team equipped to handle the needs of carers of children with IDDS.
Services in UK are currently being offered by primary care trusts, community, care trusts and mental health trusts. The only way that services to children with IDDS can be improved is by ensuring that all the organisations that have been given the responsibility of providing services to the children with IDDS work in coordination with each other.
Wright also suggests that high level of planning, cooperation between the social services, CAMHS, voluntary sector and childcare services departments is required. It has become imperative that specialist services are made available locally for children with IDDS, as they have specific needs that require professional intervention. The availability of such services has been a cause of grievance for the families of children with IDDS. Thus, these improvements have to be made on an urgent basis.
Carers of children with IDDS are more than willing to make out-of-pocket expenditures in order to improve the quality of services to their child.
When they cannot handle the expenses anymore, they opt to have the child institutionalised. Taking the example from the initiative of the Department of Health in the US, it would bring a huge respite to the parents of the children with IDDS if monetary packages were tailored to suit the specialist and financial needs of children with IDDS.
Unless these suggestions are implemented, the parents of children with IDDS will continue to feel pressurised and frustrated by their circumstances, and this will lead to unwanted repercussions. The government can make innumerable policies to safeguard the rights of children with IDDS, but unless proper implementation strategies are put in place, the onus of the implementation strategies is properly specified, and there is proper funding provided for the implementation of these policies. The communitys well-placed intentions will continue to remain on paper.
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