Children with disabilities

A needs assessment

August 2014

Sheena Carr Senior Public Health Commissioning Strategist, Public Health

Jen Johnson Project Officer, Children and Young People’s Service

Susan Otiti Assistant Director, Public Health

Graeme Walsh Senior Information Analyst, Public Health

It is anticipated that findings from this needs assessment will be used to influence local joint commissioning, ensuring that partner agencies work together to improve the experience and outcomes for families who use services in Haringey.

Section 1. Literature review

1.1 Introduction

This literature review builds upon the chapter “Disabled Children and Young People”in the Haringey Joint Strategic Needs Assessment.[1]

Definition of disability

The Disability Discrimination Act 1995[2] defines a disabled person as someone who has a physical or mental impairment, which has substantial and long term adverse effects on his or her ability to carry out normal day-to-day activities.

Causes of disability and factors affecting disabled children and their families

Disabilities may be developmental or acquired. Sometimes, several factors may combine to cause a disability and often the exact cause is unknown. There are however recognised risk factors[3]:

  • Chromosomal and genetic abnormalities – examples include syndrome such as Down syndrome; sickle cell disease causing increased risk of stroke; and phenylketouria; can be caused by chromosomal abnormalities or gene mutations.
  • Premature birth and/or low birth weight babies - Babies who are born early and/or have a low birth weight have approximately a 20% chance of having a disability. Premature birth and low birth weight can be caused by maternal lifestyle choices, for example smoking or poor nutrition. However for a majority of women who have preterm births, the causes are unclear.
  • Foetuses being exposed to drugs and/or radiation - prescription drugs, environmental pollutants and radiation can cause birth defects.
  • Poor maternal nutrition - deficiencies in key vitamins and minerals can lead to disabilities, for example hydrocephalus and spina bifida.
  • Maternal use of drugs and alcohol - excessive use of recreational drugs and alcohol amongst mothers during pregnancy can lead to developmental problems and/or disabilities in the child.
  • Maternal smoking - smoking restricts the oxygen supply to the baby raising the risk of low-birth weight and premature birth, both of which increase the probability of a child being disabled.
  • Mother and baby having different blood types - when a mother’s blood type is different to the baby’s, there is risk that the mother’s body forms antibodies that can attack the baby’s blood causing disabilities, such as cerebral palsy and deafness.
  • Infectious diseases suffered by mothers and children - a number of viral and sexual infectious diseases suffered by mothers during pregnancy, including measles and HIV, can cross the placental barrier and cause disabilities. Diseases suffered by children in early childhood, such as meningitis and measles can also cause disability.
  • Parental age - older and younger parents are more at risk of complications that can result in childhood disability. Those under 20 are more at risk of poor nutrition andpoor placental transfer of food and oxygen, whereas those who have children later are more likely to suffer from chromosomal abnormalities.
  • Economic disadvantage - families from less advantaged socioeconomic backgrounds tend to be disproportionately represented amongst those with disabilities. Those from more economically disadvantaged backgrounds may be more vulnerable to lifestyle factors that can contribute to disability and disability itself can be a major contributor to material poverty.
  • Physical injury - injury to the mother’s abdomen during pregnancy can result in disabilities when the child is born. Accidents and injuries suffered by children can also result in disability these can be life long i.e.: when a child suffers extensive head injury.
  • Mental health in children with moderate to severe learning difficulties - Children with significantly challenging behaviour which is not addressed early enough to prevent costly and challenging placements away from home e.g. children with unaddressed sensory difficulties leading to mental health/behavioural feeding.

Children with long-term disability are a diverse group. Some will have highly complex needs requiring multi-agency support across health, social services and education – the most extreme example perhaps being those who are technology-dependent. Other children will require substantially less support, although nevertheless have a long-term disability.

The Department for Education (DfE) [4]has stated that:

  • Disabled children and young people currently face multiple barriers which make it more difficult for them to achieve their potential, to achieve the outcomes their peers expect and to succeed in education.
  • 29% of disabled children nationally live in poverty.
  • The educational attainment of disabled children is unacceptably lower than that of non-disabled children and fewer than 50% of schools have accessibility plans.
  • Disabled young people aged 16-24 are less satisfied with their lives than their peers and there is a tendency for support to fall away at key transition points as young people move from child to adult services.
  • Families with disabled children report particularly high levels of unmet needs, isolation and stress.
  • Only 4% of disabled children are supported by social services. A report by the Audit Commission in 2003 found that there was a lottery of provision, inadequate strategic planning, confusing eligibility criteria, and that families were subject to long waits and had to jump through hoops to get support.
  • The prevalence of severe disability is increasing[5].

1.2 Evidence based practice

Increasing the quality and range of early years interventions[6]

While there is substantial evidence that early year’s interventions improve outcomes for children and families, it is still uncertain as to how long the gains last, whether the gains are a direct or indirect result of the intervention, and whether simpler interventions could deliver as much or even more benefit.

Research has also not yet identified which interventions work best for which groups of families. Evidence is strongest in identifying the services that parents most value, but professionals do not always share the same views as to which service outcomes are most important. However, research does show that the most effective interventions are tailored to the child and are family centred; take place in natural homely surroundings and take the family’s environment and resources into account; are structured and are the right intensity and duration; and aim to develop parent-child relationships, as well as support child development.

Research also shows that:

  • key workers improve the quality of life for families with disabled children by ensuring quicker access to benefits and support, and reducing levels of parental stress. Effective key workers have good counselling and communication skills, are able to work in partnership with parents and children and also respect their expertise. They also have specialist knowledge of different conditions. Key workers therefore should have regular training, as well as high quality supervision and support.
  • web based information offers parents instant, 24 hour support, that can be usefully focused on specific issues or problems.
  • high quality pre-school centres improve children’s cognitive development and reduce the need for special education at primary school, especially for the most disadvantaged groups of children.
  • neonatal interventions for low birth weight babies are only effective in the short-term because other associated factors, such as poverty and social exclusion may have a far greater impact than any disability or impairment.
  • Early years interventions are not meeting the needs of the most disadvantaged. The greatest benefits are experienced by families with the highest levels of social capital, education and income. Therefore, services need to compensate for social disadvantage.

Improving access to positive and inclusive activities[7]

Participating in positive activities is associated with improved outcomes for disabled children’s health and well-being. Not all services are genuinely and actively inclusive, and there are different interpretations of what inclusion means. Disabled children and their families want inclusive services where disabled children and non-disabled children meet, as well as some ‘segregated’ services exclusively for disabled children.

Research cannot yet identify the play and leisure preferences of different types of disabled children, or the different types of support they need. Indeed, there are very few studies in this area and it is difficult to draw any firm conclusions about best practice. However, implications from research for local service improvement include the following:

  • all staff need to be skilfulin facilitating inclusive play and activities between disabled and non-disabled children.
  • a range of specialist and inclusive activities should be offered to give more choice.
  • disabled children, young people and their families needs support to help them engage, particularly if they are from a disadvantaged background.
  • limited exposure to non-disabled children’s activities interferes with disabled children’s social development, particularly in terms of their understanding of peer culture.
  • there should be a cross-agency strategyto ensure all disabled children and their families receive information about local play activities.
  • taster sessions help to encourage children to try out a new activity.
  • local authorities should undertake ‘access audits’ of play and leisure services, and make changes to ensure all aspects of the service are inclusive.
  • disabled children and their families should be involved in the evaluation, redesign and development of services. Local authorities should also monitor the numbers of disabled children participating in positive activities and evaluate the outcomes.

There is also evidence about the barriers to access and participation. These barriers to the inclusion of disabled children in play and leisure activities are multiple and complex and relate to:

  • the child and their individual preferences, their confidence and belief in their abilities, shyness or lack of social skills and previous experience of inclusive play.
  • the family’s tendency to participate – e.g. socially disadvantaged families with lower levels of income and access to support, or families who have less belief in their child’s ability and lower levels of trust, may not readily access services.
  • the service, particularly the attitude and awareness of staff, their knowledge, skills and understanding.
  • lack of detailed, proactive, up-to-date and accessible information about the service on offer
  • the environment, in terms of physical access to buildings, amenities and equipment, public transport and its cost, access to childcare facilities and the attitudes of other members of the public.

Sufficient differentiation of services to meet diverse needs[8]

Research in this area is very limited and there are virtually no studies of interventions and their outcomes. In terms of providing services to meet the needs of different groups of disabled children, the evidence suggests that many disabled children and their families have similar needs, but meeting those needs requires different approaches depending on individual circumstances; and that achieving positive outcomes for disabled children requires an assessment and response to the whole family and consideration of all the social and environmental factors likely to have an impact.

Staff working with specific groups may require specialist skills and knowledge, but being able to respond flexibly to meet the needs of every disabled child should be a feature of all mainstream services. In addition, while sensitivity to culture specific needs is required, care should be taken not to assume that all members of a particular group have the same needs.

There are a number of group specific findings:

Black and minority ethnic (BME) disabled children

  • The most pressing problems affecting some disabled children from BME backgrounds are poverty and social disadvantage – these factors appear to have a greater influence on the prevalence and impact of disability than ethnicity.
  • The needs of most families are basically the same. Differences lie in the capacity and willingness of services to respond. BME groups experience more difficulties in referral and access to services, as well as racism, bullying and poor staff attitudes.
  • BME families are less aware and make less use of specialist disability services.
  • The factors specifically associated with positive outcomes for this group include collaborative relationships between families and services, which recognise any cultural differences as a source of strength; language and culturally specific information to help families make choices and be involved in decision making; and a diverse workforce and provision of interpreting and translation services.

Disabled children in asylum seeking families

  • Asylum seeking families may not report their child’s impairments for fear this may affect their immigration status.
  • Many of these families have unmet care needs and struggle to cope with unsuitable housing, being isolated and communication problems.
  • Evidence suggests greater attention should be given to their current disadvantage, rather than to any past trauma.

Disabled children with complex needs

Children who require support from multiple agencies need an effective key worker, effective case coordination and more effective transition planning between children’s and adults’ services. In addition, many parents believe that earlier intervention would have prevented the need for an away-from-home placement.

1.3 National policy drivers (a full list is included in Appendix 1)

Aiming High for Disabled Children[9]outlined the then Government’s intention to ensure that all children have the best start in life and the ongoing support that they and their families need to fulfil their potential. It recognised that disabled children are less likely to achieve as much in a range of areas as their non-disabled peers and outlined three key priority areas to improve outcomes for disabled children:

  • Access and empowerment
  • Responsive and timely support and
  • Improving quality and capacity.

Support and aspiration: A new approach to special educational needs and disability[10]

In March 2011 the Coalition Government published “Support and aspiration: A new approach to special educational needs and disability .The Green Paper outlines reforms to the way professionals work with disabled children and their families and what families can expect from local services. The key proposals from the Green Paper are outlined below:

Early identification and assessment

  • Health service professionals e.g. health visitors will work with parents to assess the development of all children to clarify where they need additional support or a different approach, through the health and development review for children aged between 2 and 2½.
  • High quality early education and childcare will be accessible to all children.
  • By 2014, children and young people aged from birth to 25 who would currently have a statement of SEN or learning difficulty assessment will have a single assessment process and an Education, Health and Care Plan which will have the same statutory protection as the statement of SEN. All services will work together with the family to agree a Plan which reflects the family’s needs and ambitions for the child or young person’s future health outcomes covering education, health, employment and independence. The plan will be clear about who is responsible for which services.
  • Local pathfinders will test how to reform the assessment process and explore the best replacement, including whether the voluntary and community sector could co-ordinate assessment and bring greater independence to the process.
  • The time taken to complete the assessment process will be reduced.

Giving parent’s control

  • Local authorities and other local services will communicate a clear local offer for families to clarify what support is available and from whom.
  • Parents will have the option of a personal budget by 2014 to give them greater control over their child’s support, with trained key workers helping them to navigate different services.
  • Parents will have access to transparent information about the funding that supports their child’s needs.
  • Parents of disabled children will continue to have access to a short break from caring while their child enjoys activities with their peers.
  • Parents will have a clear choice of school with equivalent rights to express a preference for any state funded school, including academies and free schools.

Learning and achieving