Common issues faced by parents of children with disabilities and support mechanisms available

“If I could change one thing… I would change the fact that my child and my family have to fight for every single service we need” (NCB, 2007)

What are the common issues faced by parents of children with disabilities? Critically analyse the support mechanisms currently in place in UK and the extent to which they ensure the inclusion of disabled children and their families.

Disability is viewed as a form of social issue for families with disabled or impaired children and is referred to restrictions resulting from social experiences, which requires attention and needs to be addressed via removing the barriers that children and families experience (Curran and Cole, 2014: Burke, 2008). Since, the focus of this essay is structured around the title ‘If I could change one thing…I would change the fact that my child and my family have to fight for every single service we need” (NCB, 2007) shows no signs of inclusive society. So, this essay will demonstrate a knowledge and understanding around the common issues children with disabilities and families experience. A significant knowledge of the historical context of disability and the models surrounding disability, where segregation was obvious, and the knowledge of the legislations and policies for families with disabled children, will be demonstrated first. It will also evaluate some issues highlighted when supporting parents and families of children with disabilities and SEN. Some significance is placed around the importance of multi-agencies and partnership with parents and professionals from other agencies when offering provision for families with disabled children to show whether the society has moved from integration to inclusion.

Throughout the history, negative perspectives were found towards children and individuals with disabilities and impairments. Children with disabilities were considered and portrayed to have less worth as well as were seen as ‘dwarves, hunchbacks and fools’ (Collet, 2013, p.50). Physicians emphasized on ensuring individuals with physical disabilities are treated ‘in humane’ way, nevertheless, this was not the case. Though, according to the UN convention on the Rights of the Child 1989 and UN Conventions on the Rights of Persons with Disabilities, children with disabilities have the right to live and ensures that human rights and freedom is accessible. Hence, in the earliest societies specifically during the times of Greeks, disabled children were still being abandoned as a punishment and murdered just because they had disabilities or they were imperfect (Henderson and Bryan, 2011, p.19: Dash, 2006, p.10). Not just this, the rest of survived disabled children were outcasted since they were viewed to be as economically non-functioning being unable to contribute within the society (Collet, 2013).

Furthermore, during the 1800s, children and individuals with disabilities were separated and put into segregated institutions (Darrow, 2015, p.205), which enhanced the need to put children with difficulties into different groups. This meant special schools, as specified by the London School Board (1904), for children those who were unable to be taught ‘in ordinary schools by ordinary methods’ (Thomas et al., 1998, p.3). Since, disabled children, specifically those with learning difficulties were regarded as ‘uneducable’, they were kept in mental handicap hospitals where medical interventions, therapists or treatments were being provided to cure them. This was viewed to be more of a medical model approach which was seen as a dominant discourse of disability emphasising on disability ‘to be resolved by cure’ (Farrell, 2010, chp.2: Collett, 2013).

Hence, this model concluded that special schools and treatments will allow disabled children to be ‘normal’, whilst improving their life chances (Wall, 2003, p.163). Nonetheless, segregation was underlined via this model of disability, since it failed to consider the disabled individuals’ experiences while leading them to worse problems than what they face. This meant a shift from the medical model to social model, where disability was uncovered to be a community based phenomenon; which consequently led families with disabled children to exclusion and disadvantages in life’s all areas of aspects, including ‘employment, housing, education, civil rights and transportation’ (Thomas, 2004: Thomas, 2014, pp.9-10).

The Union of the Physically Impaired Against Segregation (UPIAS, 1976) organization, published the Fundamental Principles of Disability which played a role in signifying the social model of disability (Oliver, 2009, p.42). This emphasized on the way the ‘society’ responded to the individuals with impairments. The social model of disability then enabled ‘socially created barriers and exclusions to be readily observed’ (Thomas, 2014); since this model perceives disability in terms of the environmental barriers and cultures rather than seeing it as individual’s impairment (Barnes, 2007, p.206: French and Swain, 2012, p.1). For instance, events where it is visible that society’s views ‘towards disabled people’ is a big challenge, such as an individual with speech impairment being unable to contribute in discussions (DFEE, 1999).

Hence, it should be taken into account, it’s the structural barriers that prevent impaired children with families from participating within the society (French and Swain, 2012), rather than seeing it as the individual’s problem. As Allen (2010, p.97) states cultural and economic factors often limits and prevents disabled individuals to have choices or options to have access to leisure space leading them to segregated and excluded facilities. This relates to the social model that has been criticized, where the issue of ‘otherness’ has been focused on disagreeing that the individuals with disability face physical or environmental barriers, as this is not the challenge but instead it’s the way disabled individuals are recognised as ‘other’ by the cultural values (Oliver, 2009, p.49).

For disabled children, the debate about how separate educational systems creates social disadvantages have been the focus of policy makers where the Labour government in 1970s, committee by Mary Warnock, played a role in segregated special education systems. It wasn’t until the 1978 Warnock Report on special education provision in mainstream settings for children with SEN which aimed to bring a significant change into the policies targeted towards education for children with disabilities (Walsh et al., 2000, p.231). Although, the report claimed to adapt policies and the term ‘special educational needs’ to replace the term ‘handicap’ and claimed to introduce integration, yet this has not appeared, since no expectation of children with ‘special needs’ has been seen as functionally integrated (Avramidis and Norwich, 2002).

The Warnock report recommended, therefore, to introduce the Education Act 1981 to assess the special needs of children with disabilities as an inclusive approach. This also set out key principles for disabled children to ensure that disabled children are to be taught alongside children without disabilities, ensuring parents are involved in the assessment procedure, provision is ‘child-centered’ and that it’s meeting all children’s needs individually (Read et al., 2006). However, to specialise the needs of disabled children, their education continuously remained separate by professionals. The Salamanca Statement & Framework to action on special needs education (1994) was known as the first statement to support the idea of inclusion for children with SEN. It attempted to bring change in governmental policies by stating policies to adopt principles of ‘inclusive’ education via including all disabled children in regular schools (UNESCO, 1994). Since, regular schools that provide an inclusive environment has been known as an effective way of overcoming attitudes of discrimination from others and it creates a welcoming community to offer inclusion (Ibid). However, majority of disabled individuals still continued to be experiencing exclusion due to having some sort of disability, for instance, in 2002/03 data showed children being excluded from schools especially those with special educational needs (Gerison, 2005) shows lack of inclusion.

Though, an aim to implement an anti-discrimination act was being made during the 1980s before the UNESCO was introduced including the DDA. Regardless the Conservative Thatcher Government was non-cooperative and said ‘no evidence of discrimination against disabled people’ is found (Barnes, 2007, p.208). Nevertheless, after various attempts, by the 1990s, the British political parties finally emphasized the need for key policies and practices. This included the Conservative government introducing the Disability Discrimination Act 1995, in order to tackle discrimination (Thomas and Smith, 2009, p.19: Barnes, 2006, p.167). This legislation certified that discriminating against people with disabilities is unlawful and forbidden, in areas including employment, education and support provision (Hodkinson and Vickerman, 2009, p.41). Though, DDA 1995 underlined that having access to mainstream and specialist services is significant, in this case for families with disabled children. Research, however, found that there have been a little awareness of the DDA 1995 effects in terms of service delivery (Clarke, 2006, p.21) meant further developments.

All these Government's successive policies and legislations were being put into place to promote disabled children and families’ rights, however, research shows critiques of the services being delivered. Barriers including insufficient support, unemployment and poverty; all was related to the challenges for families with disabled children resulting into children being placed into foster care for instance (Mitchell, 2017, p.345). This is because parents’ employment is likely to be affected due to caregiving, as Fetton and Mearns (2012) highlights almost 500,000 working families’ ability to work is significantly affected due to their child’s disability almost relating to the medical model of approach. Since, reduced working hours lead to financial strain for families with disabled children and prevents and restricts their rights to have access to services and formal or informal support (Kenny and McGilloway, 2007, p.222). Families struggling to apply for affordable childcare meant unavailability of suitable childcare for their disabled child to be looked after is another challenge leading to parent unemployment (Thom et al., 2007, p.173). Experiencing frustration due to lack of service provision and support for parents of children with disabilities instead of the child’s disability led to families facing challenges which were ‘socially constructed’ shows families had to fight for their rights to services.

Furthermore, living in suitable housing for families with disabled children is a key factor in promoting their wellbeing. Yet, having access to appropriate housing is unaffordable due to lack of income, as another barrier which means families having to apply for housing via local housing authorities (Morris, 1994). Although, majority of the housing departments failed ‘to integrate disabled individuals and families’ within their assigned policies. This also means families with disabled individuals having higher chances of ‘experiencing poor housing conditions’ which could be due to the low-income owners. Research resource by Beresford (2008) on housing access for disabled children and families present data showing ‘low figures’ of families with disabled children living in a suitable housing due to overcrowded accommodation and housing in poor state, such as inaccessible kitchen etc. resulting into parental stress. Other studies including General Household Survey conducted in 1970 and 1992, investigating the needs of families with disabled children revealed, families struggled while living in unsuitable housing facing difficult circumstances without sufficient financial support (Ward, 1999). This reason behind this could also be, in terms of service responses, that not just the housing is insufficient, yet, disability itself has not been defined widely where housing has been an issue.

On the other hand, when applying the process is not easy as families being referred to be assessed medically is another challenge. This action being disapproved by disability organizations highlights that it has failed, as individuals’ health problems have been focused on in terms of housing provision, rather than focusing on difficulties that families face while living in unsuitable housing conditions (Ibid, p.139). This shows families being left to fight for appropriate support. As a result this approach is related to the social model of disability indicating families with disabled children face difficulties due to structural barriers instead of their child’s disability.

However, the causes behind these barriers could have been due to different political ideologies having a great impact on the types of services and policies that were placed for families with disabled children. Since, individuals without disability have the power of policies, they are effective enough to simply carry out the duties by increasing the concept of disability instead of focusing on the values of ‘those who are different’ (Morris, 1994, p.148). There have been 3 different types of service provision available for children with SEN, which included Universal services, targeted and specialist services. Offering universal services meant available for all children with and without disabilities, while targeted services promotes support for only certain groups of children which is accessed via universal children’s services, such as children’s centres (Hussain and Brownhill, 2014: Hodkinson, 2015).

In the 1990s, Sure Start children’s centre as an early intervention approach, by the New Labour government, was introduced to offer interventions via joined-up and an ‘integrated approach’ for special needs childcare and education as a universal provision (Lewis, 2011: Pinney, 2007: DCSF, 2008). Nevertheless, changes within this provision from universal to targeted due to changes in government from New Labour to Coalition influenced majority of the disabled families negatively that were offered services. National Evaluation of Sure Start report results in 2005 and 2017 showed Sure Start has not effectively been meeting the needs of disadvantaged children (NESS, 2005: Bate and Foster, 2017, p.8). Despite core service provision claimed to have been offered to children with special needs, yet, parents had to face barriers including extra financial costs and living in low income leading to stress meant facing difficulties in gaining support. This also meant no major improvements were being shown in early years provision quality or children with SEN being included (Pinney, 2007), resulting into parents fighting for services. Therefore, policy makes could prevent this via promoting and continue to offer universal services to ensure parents engage via building trust to identify the needs of their disabled children, where ‘universal’ provision should remain available.

The Disability Discrimination Act 2005, moved from the DDA 1995, as a new act has aimed to amend previous provisions by ensuring equality is being promoted to offer equal opportunities for people with disabilities and making it illegal to discriminate against any disabled person, which then also followed the Disability Rights Commission 2006 (Hughes and Ferret, 2009, p.513). Whilst the amendments of the DDA 2005 have been embraced by individuals and children with impairments, yet even after so many years, discrimination is still universal (Pearson et al., 2011). Negative attitudes have still been aggravated towards people with learning impairments or mental health conditions being shown in studies, since it has a starting point which could be due to a lack of understanding and awareness about disabilities or even because of common negative stereotypes (Aiden and McCarthy, 2014). Having negative perspectives and approaches towards disabled or impaired individuals reveals not full ‘integration’ or ‘inclusion’ being shown towards impaired individuals and children, thus, this could mean inequality which requires awareness (Hannon, 2006, p.7).

As a change, it is important for the political parties to ensure the focus is directly on individual’s attitudes being changed towards the treatment of disabled individuals (DFEE, 1999), in order to provide inclusion. For families with SEND children, it has been difficult to access support and services fully inclusive consequently resulting into delayed support. Therefore, a significant shift in policies since 2007 has been shown to ensure professionals working with families involve parental partnership and to promote children’s rights. All individuals with disabilities are to be viewed as those authorized to claim for necessary support and services to live a ‘dignified life’ (O’Cinneide, 2009, p.163). Therefore, United Nations Convention on the Rights of the Child (UNCRC) was adopted since the 19th century, which set out children’s rights containing 54 articles, regardless of the child’s race, religion or abilities and to ensure it is available for all children.

As another major development, the Convention on the Rights of Persons with Disabilities 2009 (CRPD) also being implemented to ensure, all disabled individuals’ rights are treated as fully equal citizen within the UK. This convention emphasized on the importance of a ‘paradigm shift’ in attitude towards individuals with disabilities by perceiving disabled people as individuals with ‘rights’ (Save the Children, 2009). This shift manifests the social model of disability where it recognises to change the ‘attitude of society’ to promote dignity of people instead of focusing on the disabled person’s impairment. Having these disability rights helps to bring out the political attention on the effects of this ‘norm’ society as the social model instead of focusing on “fixing” people (Devolder, 2009, p.43).

The Equality Act 2010 was also being introduced by the New Labour government as an approach to pursue the social model of disability which allowed ‘inclusion’ to be put into place moved from ‘integration’. The Act 2010 therefore, simplified previous anti-discrimination legislations via uniting all of them into one piece of legislation by reinforcing rights of disabled individuals (Nutbrown et al., 2013). Children and Families Act (CFA) 2014, as one of another legislation own key principles including the ‘early identification of children’s needs’ and ‘early intervention’ as a support mechanism for children with disabilities and their families. This act also emphasizes on ensuring there is collaboration and cooperation between agencies that provide education and care services, while ensuring it is high quality provision, for children with SEN (Norwich and Eaton, 2015, p.121).

Alongside this, the SEND Code of Practice (2015), in order to demonstrate the changes within the Children and Families Act (2014), has been set out for local authorities to develop joined up arrangements. This is to offer services in order to improve results for children with SEND (Nasen, 2015), since previous laws were resulting into poor outcomes for children. SEND Code of Practice 2015 has been implemented with some changes ensuring ‘joint commissioned arrangements’ provide services and support for children aged 0 to 25 years old with SEND (Ibid, p.5).

Though the SENDCO practice places requirement of local authorities to be collaborating jointly to ‘integrate’ educational provision for families with SEN or disabled children, such as multi-agency. Yet, clear assumptions are being made that multi-agency groups will ‘just work’ after improved outcomes for children with SEN have been acknowledged (Norwich and Eaton, 2015). Statements of SEN have been criticized since ‘little value in helping’ to meet children’s needs have been provided while resulting into parents being dependent on the process that is stressful (Ibid, 121). A recent survey conducted by the National Autistic Society, focusing on the impact of the new SEN policy, via a Local Offer being provided to over 1,000 parents, showed almost 74% being unable to find the educational support for their children’s need any easier, while 69% of parents complained about the delays in the support given where 16% had waited for years (SEN Forum, 2016). Parents giving feedbacks of delayed in SEN service provision results into children having unrecoverable loss of function or even where interventions might be less effective leading to developmental delays. Thereby, ‘early intervention’ or identification of barriers that occur in children’s social and physical development is vital if inclusion is to be offered (DoH, 2004).

Implementing all these policies and legislations have beneficial tools to support families with disabled and SEN children, however, after all these years of shifts in policies, often families still notice little being done. This is because often system of services being offered to families with SEND is known to be quite complex, thus professionals work separately in order to meet a particular child’s needs.

The changing phase of Sure Start in 2010, since the Coalition government took control over the early interventions services, had a great impact on the inability of the services being offered to families. The Coalition bought a shift in the cuts of local authority funded early intervention services which dropped down from £3 billion to £2.3 billion in 2014/15, removed majority of the services including cuts to children’s services and with a reduction in the amount being spent on children’s centres meant less children’s centres, that support children to improve their lives and overcome poor outcomes (National Children’s Bureau, 2015, pp.3-5). This shows having a political power and implementing significant shifts into services has been one of the major barriers for families with disabled children, which meant inadequate services.

Not just this, since Coalition government focused merely on offering residual welfare for families, they decided to ‘focus much more effectively on those families who need them the most’ (Lord et al., 2011). Targeting families those at most disadvantage shows families being left to fight for their services even after so many years. This could even be due to families being unable to access services due to the location of a service. Families struggle to attend support services if located outside their community even providing ‘universal’ services if offered, this could even result into failure of parental engagement in services (Katz et al., 2007).

As part of the Multi-Agency approach, as stated by the Children and Families Act 2014 and the SEN Code of Practice 2015, the need to identify the needs of SEN children early and to implement collaboration between agencies to achieve involves different strategies. Common Assessment Framework (CAF) as one of the early intervention targeted approaches can be used in children’s service provision areas for families with disabled children. Using CAF allows practitioners to have an early identification of children’s additional needs and provide coordinated services via collaborating with children, families, practitioners and other agencies to meet those needs at an early stage (Holmes and McDermid, 2014: CWDC, 2006).

CAF as an early assessment is known to be part of the government’s strategy to move the focus to prevent difficulties arising in children’s lives from happening in the first place, rather than dealing with the consequences of those problems later (Brandon et al., 2006). The Team Around the Child (TAC) as a multi-agency approach is vital to bring practitioners and professionals with different professional roles to join up and coordinate to promote services that offers solutions to meet children’s needs once recognized via the CAF assessment process (DfE, 2010). However, there appears to be numerous characteristics being unfolded either helping or hindering the CAF implementation process which impacts inclusion of families gaining access to CAF. According to a national government evaluation focusing on the implementation of CAF, showed barriers including lack of support, lack of multi-agency join-up and professionals having confusion about the CAF process (Brandon et al., 2006). This also compared to study by Holmes and McDermid (2014) between 2010 and 2012, aimed to assess the costs and impacts of CAF after four to six years still showed somewhat similar implications including leading to cuts in services for children and families.

To ensure poor services being provided to families with disabled or SEN children means an effective multi-agency needs to be put into place which means ensuring roles and responsibilities of professionals are clarified, ensuring mutual respect via sharing skills and expertise and agencies have an understanding via joint training (Atkinson et al., 2007). Since, children with disabilities and their families require multiple assessment being conducted which involves collaborative multi-agency where professionals from different agencies obtain similar information.

Though, Munro Review proposes the view that when working with children and families that have additional needs, ensuring positive results of the approaches are to be found while ensuring not much workload is being placed on practitioners working (Munro, 2010, 2011). However, barriers to the best service provision involved lead professionals creating additional workload (Holmes and McDermid, 2014). This meant research also showed professionals using CAF, take shortcuts and even face difficulties in implementing the CAF process where a timescale assessment was being used when gaining data from families and other professionals. Alongside this, only ‘seeing the child’ in the time allocated, rather than spending time to show meaningful collaboration was another barrier (Horwath, 2011). Since, children with SEN and disabilities and parental partnership with professionals is important in providing and offering ‘inclusive’ practice (European Commission, 2013). Yet, shortcut practice shows children’s needs not being met effectively while lack of children’s involvement, which means it’s just the ‘completion of the forms’ and the custom that operates practices due to lack of partnership (Ibid, p.1078), leading into families will still be fighting for inclusive practice.

As part of the multi-agency approach, practitioners working with children who have disabilities or SEN, must ensure parents and families are involved to achieve full potential for their children, since, parents play the most important role in their child’s life (DfES, 2001). Collaborating with parents and engaging with them is effective since parents’ wishes and views are being taken into account especially on their children’s holistic development. Yet, a reduction in parenting involvement is shown, it is due to parents having poor or lack of a good understanding of the services being provided and the ways it could help (Katz et al., 2007). Ensuring a positive and good communication between parents and practitioners is the key, as according to the SENDCO (2014) and EYFS (2017) parents and families must be involved in decision making since parents have more knowledge about their child (Nasen, 2015: DfE, 2017). This also involves good relationship with parents while seeing parents as equal partners and ensuring simple communication/language is used to cooperate in order to provide inclusion for families and children with disabilities.

In summary, this journey from segregation to inclusion for children with disabilities and their families have been constantly changing. Since the 19th century until now, majority of the policies, practices and acts were initiated to ensure exclusion is removed in relevance to the social model of disability. Though, some changes appeared in terms of inclusion, yet the term ‘inclusion’ has been unconventional for the society. Nonetheless, in reality society continuously discriminating and excluding individuals and families with disabilities. This leads to the misfortune reality of families with disabled children having to struggle for services which means the definite fault is of the government’s policies that miss out the opportunity to discover the real problem. Word count: 3560

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