Publication - Advice and guidance

Supporting disabled children, young people and their families: guidance

Published: 24 Apr 2019

Guidance to help improve the experiences of disabled children, young people, and their families.

Contents
Supporting disabled children, young people and their families: guidance
Health and social care

Health and social care

In this section you can find out about…

(Please note that it is not possible for the content in this section to include further information about services which are necessarily local to you ; however this may be obtained by accessing the ALISS Website - A Local Information Directory For Scotland is a Directory compiled by the Health and Social Care ALLIANCE. The Contact Website and Helpline may also be able to provide information about services near you: https://contact.org.uk/advice-and-support/local-support/  : Tel 0808 808 3555. You may also wish to search the Disability Information Scotland directory)

Health and Social Care Principles and Standards

Scottish Government is committed to providing disabled children and young people the best possible quality of care and the Health and Social Care Standards set out what we should expect when using health, social care or social work services in Scotland. The Standards are for everyone. We are all entitled to the same high quality care and support.They are underpinned by five principles and based on five outcomes.

The Principles are:-

  • dignity and respect
  • compassion
  • be included
  • responsive care
  • support and wellbeing.

The Standards are:-

  • I experience high quality care and support that is right for me.
  • I am fully involved in all decisions about my care and support.
  • I have confidence in the people who support and care for me.
  • I have confidence in the organisation providing my care and support.
  • I experience a high quality environment if the organisation provides the premises.

Example:

Principle: Dignity and respect.
Standard: I am accepted and valued whatever my needs, ability, gender, age, faith, mental health status, race background or sexual orientation.
Outcome: I experience high quality care and support that is right for me.

 Who ensures that services meet the right standards?

The Care Inspectorate undertakes quality checks and publishes reports on a number of care services such as in-home support, day care, care homes and a wide range of services as described on the Care Information Scotland website. More information can be found on the Care Inspectorate website.

Healthcare Improvement Scotland provides public assurance about the quality and safety of healthcare through the scrutiny of NHS Hospitals and Services and Independent Healthcare Services regularly publishing reports and findings on performance, providing accountability of services to the people who use them.

Integration of Health and Social Care

The way we plan and deliver health and social care services in Scotland has changed. In 2016, we legislated to bring together health and social care in to a single, integrated system, with the introduction of  Integration Authorities  and "Integrated Joint Boards"  providing a greater emphasis on joining up services and focusing on early intervention and prevention. You can find out information about Integration Authorities such as the name of the Chief Officer of the Integration Authority in your local area, and view key documents, responsibilities  and reports.

Using Digital Technology  to improve Healthcare

The Scottish Government has a Digital Health and Care Strategy in partnership with the NHS and local government.   It sets out an ambition to make far greater use of the technology we increasingly use in our everyday lives, such as smartphones and internet connected devices, to access healthcare and take greater control over our own health and wellbeing.  Examples include video access to appointments, the use of sensor technology to support people in their own home and communities, communication aids and – longer-term – access to their own health information.  As well as bringing our health and care services up to date, embracing digital technology in this way will lead to a more predictive service that helps prevent hospital admissions and promote health outcomes.  An example can be found in work the Scottish Government is doing with the innovation charity NESTA, through the Healthier Lives Data Fund.

"Health Literacy" -  understanding more about my health

In 2014, Scotland published its first Health Literacy action plan, called ‘Making it Easy’. It set out the ambition for Scotland to be a society with a clearer understanding of personal health and  health related issues, i.e. a "health literate" society - enabling people to have the confidence, knowledge and skills to maintain good health.  Central to promoting health literacy is the need for healthcare teams to communicate effectively in a way that is readily understood. This encourages the use of techniques which involve breaking down information into smaller sections, checking for understanding, avoiding jargon, and utilising visual supports. Offers of help with paperwork can also be beneficial.  ‘Making it Easier, a health literacy action plan for Scotland for 2017-2025’ was published in November 2017.  More detail about Scotland’s health literacy work can be found at the Health Literacy Place website.

Health Care destinations and support for Children and Young People and those who care for them

(Please note that this guide does not set to provide information about the large number of specific health conditions ; however, if necessary details are not found on the NHS Inform Resource, information about individual health conditions can be found on the Contact Website)

Navigating NHS Services can be quite challenging, particularly when a number of different professionals are involved.

The NHS Inform website including a section for young people and helpline are available to access information on health, treatments, patient rights and long term conditions.

Children's Health Scotland is a charity dedicated to promoting and championing the needs of all children and young people and their families at times of illness, and provides a Website which offers information and advice and contact destinations for an extensive range of childhood conditions.

What to do if I have concerns about my child's health or development

If you have concerns about your child's development, then you can talk to your GP or health visitor who will arrange for further assessment.

Long term health risks may have been identified before discharge from maternity and newborn services when similar arrangements will be made. This will involve being assessed by a Specialist Team as part of "Secondary Care". For more complex or rare conditions this may mean referral to a "Tertiary care" Team in a larger regional centre.

Ongoing assessment often includes input from a Child Development Team  adopting a holistic "multidisciplinary" approach. This often requires input from Allied Health Professionals, or  "AHP's "(see below) and liaison with colleagues in Social Services and Education. Early adoption of the child centred GIRFEC approach is important and facilitates communication and long term planning.

See the Disability in Context section of this site for more on GIRFEC

Information about the health professionals you may meet like Allied Health Professionals  can be found in the section below and also on the Contact website.  

Health Visitors

The Universal Health Visiting Pathway in Scotland (October 2015) presents a core home visiting programme to be offered to all families by health visitors as a minimum standard. This consists of 11 home visits to all families, three of which include a formal review of the family and the child’s health by the health visitor (at 13-15 months, 27-30 months and before starting school). It covers the antenatal to pre-school period and provides an opportunity for health visitors, children and their parents to build a strong relationship so that health visitors can appropriately support families, including acting as a gateway to other services.

Allied Health Professionals and their role

Allied Health Professionals (AHPs) provide reassurance, advice, signposting, assessment and/or interventions to support children who are ill, have disabilities or additional needs, to live life as fully as possible and to achieve wellbeing outcomes. They work across a wide range of different settings including the community, people’s homes, nurseries and schools, as well as hospitals. They mainly work for the NHS but can also work in the independent sector and for charities. Twelve professions are listed under the AHP umbrella.  Pharmacists also play a key role in the NHS ensuring the most efficient, cost-effective use of medicines, as well as providing advice and support so that medicines are used safely and as prescribed.

Who the Allied Health Professionals are:

 

Arts therapist

 

Arts therapists use art, dance, drama and music as a therapeutic intervention to help people with physical, mental, social and emotional difficulties. There are now four arts therapies with the preferred names of: art therapy/art psychotherapists; dance movement psychotherapy; dramatherapy; music therapy.

Diagnostic radiographer

Produces high quality images on film and other recording media, using all kinds of radiation.

Dietitian

Dietitians translate the science of nutrition into practical information about food.  They work with people to promote nutritional wellbeing, prevent food-related problems and treat disease.

Occupational therapist

Occupational Therapists help people to overcome physical, psychological or social problems arising from illness or disability, by concentrating on what they are able to achieve, rather than on their disabilities.

Orthoptist

Orthoptists assess and manage a range of eye problems, mainly those affecting the way the eyes move, such as squint (strabismus) and lazy eye (amblyopia).

Orthotist

Orthotists provide braces, splints, and special footwear to help patients with movement difficulties and to relieve discomfort.

Paramedic

Paramedics respond to all aspects of urgent and emergency care, ranging from problems such as cardiac arrest, heart attacks, strokes, spinal injuries and major trauma, to minor illnesses and injuries.

Physiotherapist

Physiotherapists treat the physical problems caused by accidents, illness and ageing, particularly those that affect the muscles, bones, heart, circulation and lungs.

Podiatrist

Podiatrists, sometimes known as chiropodists, specialise in keeping feet in a healthy condition.  They play a particularly important role in helping older people to stay mobile and, therefore, independent.

Prosthetist

Prosthetists design and fit artificial replacements - or prostheses – for upper and lower limbs. They design and fit the best possible artificial replacements for patients who have lost or were born without a limb. 

Speech and language therapist

Speech and Language Therapists work with people who have problems with communication, including speech defects, or with chewing or swallowing.

Therapeutic radiographer

Treats mainly cancer patients using ionising radiation and, occasionally, drugs. Provide care across the entire spectrum of cancer services.

Ready to Act (Scottish Government, 2016) is the national transformational framework supporting the development of an AHP children and young people’s community across Scotland. Its focus is on promoting early intervention and prevention and enhancing the accessibility of services for stakeholders, children and young people, their parents and carers, in response to wellbeing needs.

For extra information on Speech and Language therapists see the Royal College of Speech and Language factsheet.

Provision of equipment and adaptations

The provision of specialist equipment and adaptations is the duty of local authorities and health services.

Equipment and adaptations play an important role in health and social care and help disabled children and young people to live well in their own home and to achieve a good quality of life. They help to meet the health, housing, social care and educational needs of disabled children and young people supporting independence.

Equipment is: an item or product used to support someone

Shower chairs, bath lifts, raised toilet seats

Wheelchair or other mobility aids

Equipment for people with sensory impairment, such as a flashing doorbell or a text-phone

Beds

Adaptations are: changes or modifications made to an environment, such as a house, to help support a person

Replacing a bath with a walk in shower

Building a ramp or widening door-frames to allow access

Fitting lower work surfaces in the kitchen

The Scottish Government advise Health Boards and local authorities on their statutory responsibilities in relation to the provision of equipment to meet the identified wellbeing needs of disabled children and young people in the community.  The advice supports practice that is compatible with Getting it right for every child (GIRFEC) .The guidance recommends that partnerships establish care pathways for the provision of equipment to children and young people with complex needs. Pathways should include relevant local authority and health services, including Social Work and Education, and where appropriate the local integration authority.

Although some children and young people with very complex needs may require highly specialist 'bespoke items', the majority of equipment provided can be categorised as ‘standard children’s equipment’. This includes bathing/showering and seating solutions, as well as items to provide postural support (including sleep systems), mobility, and moving and handling.  Providers of services are encouraged to establish ‘Standard Core Stock for Children’ for the range of needs most commonly met.

If the equipment you need can’t be funded by the NHS or local authority, you may be able to apply to a charitable organisation for funding or loan of equipment. Organisations such as Newlife can provide this service. Your social worker should be able to advise on any alternative sources of funding or support available to you. Contact provide information on Aids, Equipment and Adaptations.

Hospital Visits and Admissions  

Attending hospital for clinics and procedures can sometimes be stressful. Appropriate information and support to minimise upset and prepare in advance is available on the What?Why? Website.  If hospital based care and admission is needed, the European Association for Children in Hospital (EACH) has published the "Each Charter" advocating quality standards and rights for children in hospital and involves 10 "articles" describing the care you can expect to receive.  Lisa's story about how she used the EACH Charter to consent to complicated surgery is in the Rights Awareness section.

Life Story - Teddy Hospital – John-Paul

John-Paul was born with chronic renal failure on 25th August 2010 and spent a few years on dialysis until he received a live donor kidney transplant on 16 April 2014 and continued to receive weekly blood tests.  The process and repeated tests became a way of life for us as a family and John-Paul just got on with it without complaining however in the lead up to ultra sounds, operations etc he was quieter than usual however never complained about the procedure and accepted it saying he was fine. We always assumed he was born with kidney failure and didn't know any different and this was his "normal".

Following transplant John-Paul started to take anti-rejection drugs to prolong his new kidney.  As a result of this he is prone to catching any coughs and colds going about and requires regular bloods and urine tests to ensure he is in good health, however December 2016 he contracted Type A Influenza where the virus started to attack his brain causing his to take seizures and was put into an induced coma to protect his brain.

He spent 11 nights on a ventilator in the Paediatric Intensive Care Unit however when the time came to waking him up his lungs collapsed and this prevented removal of the ventilator for another few days. When he was awake we discovered he had lost all his motor skills, only being able to move his eyes and was transferred to the neurology ward. Over the course of four months he required daily physio, orthotics, speech and language and various types of aids and supports to gain the ability to communicate and learn to walk.

During this time spent in hospital John-Paul was in was introduced to Jane from the Teddy Hospital during teddy walk round.  It is impossible to put into words the talent that Jane has explaining and reassuring kids how complexed procedure are carried out in her role playing games. John-Paul only just learned to speak again and Teddy hospital helped him build his confidence and express himself during these role play games bringing on and encouraging his speech which helped him find his voice.

Following discharge John-Paul still talks about Teddy Hospital and always wants to visit it at clinic appointments.  He has an ambition to be a doctor and fees he's in that role already when working with Jane and now talks openly about cannula's, surgery, MRI, X-ray and ultrasound telling his teddy's what they will feel. “It’s ok to be scared, I'm the same sometimes but it’s all going to be fine.” 

Sleep Problems in Children and Young People with a Disability

Sleep difficulties, such as delayed settling and night wakening, are common in children with additional support needs and can have a major impact on quality of life for the individual affected and for families and carers. Daytime behaviour and self-regulation can also be affected. Advice and counselling and behavioural approaches may be effective e.g. from your health visitor or from a trained sleep counsellor who can be contacted via Sleep Scotland.  Further Specialist advice and treatment may be needed in situations where initial behavioural management is unsuccessful.

The Family fund conduct various types of research on sleep issues and how best to support children and families who face them. Much of this research has gone towards producing a website called Tired Out, which provides information, advice and resources on sleep support.

Managed Clinical Networks in Scotland (MCN's)

National Networks were introduced to address circumstances where the full range of specialist care for patients with rare conditions and/or complex needs are not available within an NHS board, or even within a region. MCN's bring together everyone involved in providing specialist care for particular groups of patients – health and other professionals, patients, carers, families and voluntary groups. Each network designs pathways of care that ensure patients and their families have equal access to the highest standards of care, regardless of where they live in Scotland and as close to the patient’s home as possible.

The main focus of National Networks is service improvement and planning and education to build capacity and capability in specialist care – for both professionals and carers, communicating and engaging with stakeholders – ensuring that there is an understanding of what is needed,  involving them in shaping services that meet patient and carer expectations.

Examples of individual MCN's include those providing support for children and young people and their families and carers when living with muscle disorders, epilepsy, visual impairment, acquired brain injury, and those with complex and exceptional healthcare needs.  

The individual networks can be contacted on the above web links ; also for the complete list of MCN's and further contact details see the National Network Management Service.

Anticipatory Care Plans

Young  people with serious long term conditions or chronic health problems can benefit from having an Anticipatory Care Plan. This assists in thinking and planning ahead and understanding their health, e.g. how to use services better , helping to control and  make choices about  future care. This is a useful document which is not legally binding and can be completed together with health and social care professionals.

Palliative and End of Life Care

The Strategic Framework for Action on Palliative and End of Life Care sets out the vision that by 2021 everyone in Scotland who needs palliative care will have access, with associated outcomes and commitments to support improvements in the delivery of palliative and end of life care. Action on Palliative and End of Life Care includes a particular commitment to ‘Support and promote the further development of holistic palliative care for the 0-25 years old age group’. The Scottish Government is working with stakeholders including Children’s Hospices Across Scotland, also known as CHAS, members of the clinical community and Health and Social Care Partnerships to take forward work associated with this commitment. 

CHAS offers a range of care and support services to children and young people living in Scotland aged 0 - 21, with new referrals up to age 18.

Those needing support, you can  make a referral - either personally or with the help of  a health professional. There is also an  online referral form for those who may want to self-refer. Telephone support and information is available on the following numbers:- Rachel House: 01577 865 777 or Robin House: 01389 722 055.

More information and advice to help every child and family living with a life-limiting or life-threatening condition get the very best care and support they can so they can make the most of every moment together is available on the Together for Short Lives  Website

Where can I find an accessible dentist?

Accessible information about Dentistry in Scotland, for example, how to access emergency dental treatment, how to find a dentist and what are the costs of dental treatment can be found at Scottish Dental.

What if I’m not happy with the medical care I’ve been given?

If you are unhappy with NHS services you have a right to make a complaint, raise a concern, give comments and give feedback. Complaints should be made through the national Complaints Handling Procedures which are the same for every NHS Board in Scotland.

Stage one: The NHS aims to resolve complaints quickly. However, it is sometimes necessary to make enquiries before responding to a complaint. They aim to provide a decision at Stage one within five working days or less, unless there are exceptional circumstances. If this is the case, the NHS will explain why your complaint cannot be resolved and offer advice on what to do next. They may suggest that you take your complaint to the next stage.

Stage two: This deals with two types of complaints; those which are more complex and require a detailed investigation; and those which have not been resolved at Stage one. The NHS aims to deal with these within 20 working days.

Where possible, it’s best to speak with a member of staff or to the service concerned as it can help to make sure your complaint is dealt with quickly and directly. You can also complain by phone, email or in writing to your local NHS board. If you are uncomfortable with complaining directly, a representative of your choosing, such as a relative, friend, carer or advocate can make the complaint on your behalf.

If you have followed this procedure and are not satisfied with the way in which your complaint has been managed, you can contact the Scottish Public Services Ombudsman (SPSO), who have published a helpful guide to making complaints.

More Information? If you need more support with any issue relating to NHS healthcare, including making a complaint, you can contact PASS, the Patients Advice and Support Service.

Social Services and support in my local community

Social care means all forms of personal care and other practical assistance for children, young people and adults who need extra support.

Local authorities have a duty to provide specific services to disabled children which may include help with the personal care, meals and home adaptations. They may also offer financial support , help with recreational and leisure activities, travel assistance, and respite care.

If you think you or your child needs any of these services, then you should contact your local authority.

Any assistance should be based on an assessment of your family’s care needs and should take account of your preferences. Social workers will want to discuss what is important to your child and family, what goals to set for care; including how support will improve quality of life. Social workers will help families agree upon what support options are best suited to achieving this. They may also act in a liaison role by contacting other professionals such as healthcare and education teams.

What about self-directed support?

Self-directed support describes the mainstream approach by which social care is provided to eligible people of any age. It aims to give families more choice and control over their support, and is grounded in the human rights principles of autonomy, self-determination, dignity and respect.

Local Authorities have a duty to offer anyone eligible for social care four options about how their support is delivered:

  • Direct payment, to pay for the support yourself;  
  • The council can give the money to a provider or organisation of your choice and you can direct how it’s spent;
  • The council can arrange a service for you;
  • You can choose a mixture of these previous three options for different parts of your social care support.

By giving families greater choice and control over care support, this self-directed approach is designed to ensure that what matters to the child is central to every decision made.

Scotland is changing the way social care operates, ensuring that people, their carers and families are fully involved in all decisions about support.  Scottish Government has worked with COSLA and a range of partners to build on everything we have learnt so far and to develop actions to drive forward implementation in 2019 to 2021.  This plan will be published in June 2019.

The Scottish Government recognises that navigating the social care system can be difficult. That’s why the Scottish Government funds independent support organisations via a programme called Support in the Right Direction. These organisations provide people with advice, advocacy, information and support throughout their social care journey.  You can find information with details of the self-directed support options on the SDS Scotland website as well as how to proceed by using the get help button on the right hand side of the page to help find services in your area. 

More information about self-directed support can be found at the following sites:

What if I’m not happy with social work services?

All local authorities must have a complaints procedure in place which they are legally bound to follow.  Local authority complaints procedures are in line with the standard processes in place for public services in Scotland.

Social work complaints procedure has two stages for complaints.   

  • Stage 1 - Frontline resolution which will aim to quickly resolve the complaint.  A decision will be given in 5 working days or less, unless there are exceptional circumstances   
  • Stage 2 – Investigation.  Unresolved complaints at stage 1 or complaints requiring detailed examination will be dealt under stage 2 investigations.  A response to the complaint must be provided not later than 20 working days.  

If you are not satisfied with the local authority’s response to your concerns, after following the complaints process, you can raise a complaint with the Scottish Public Services Ombudsman (SPSO), Freepost SPSO, Scottish Public Services Ombudsman, 4 Melville Street, Edinburgh, EH3 7NS (Freephone 0800 377 7330 or 0131 225 5300).  The SPSO also looks at complaints arising from claims of maladministration or service failure.  The SPCO Service is independent, impartial and free.