We have responded to this Scottish Government consultation, highlighting the importance of fully accessible housing to disabled children and young people.
Enhancing the accessibility, adaptability, and usability of Scotland’s homes
Scottish Government Consultation
Established by the Commissioner for Children and Young People (Scotland) Act 2003, the Commissioner is responsible for promoting and safeguarding the rights of all children and young people in Scotland, giving particular attention to the United Nations Convention on the Rights of the Child (UNCRC). The Commissioner has powers to review law, policy and practice and to take action to promote and protect rights.
The Commissioner is fully independent of the Scottish Government.
We welcome the revision of this guidance and the intention to increase the accessibility, adaptability and usability of Scotland’s homes. We agree that the proposals will enhance the accessibility and adaptability of new homes in Scotland, however we are concerned that insufficient attention has been given to the specific needs of disabled children and how they differ from those of disabled adults.
This is disappointing given the Scottish Government’s commitment to incorporation of the UNCRC as well as further legislation incorporating the UN Convention on the Rights of People with Disabilities (UNCRPD), the International Covenant of Economic Social and Cultural Rights (ICESCR) and other international human rights treaties as well as their ongoing commitment to the Sustainable Development Goals.
International human rights law recognises everyone has a right to an adequate standard of living, including adequate housing. This includes security of tenure, accessibility and protection against threats to health. The UN Committee on Economic, Social and Cultural Rights, in their General Comment No. 4: the Right to Adequate Housing defines the concept of adequate housing as including:
- Legal security of tenure
- Availability of services, materials, facilities and infrastructure
- Cultural adequacy
On Accessibility, the General Comment states:
Adequate housing must be accessible to those entitled to it. Disadvantaged groups must be accorded full and sustainable access to adequate housing resources.
Or as the UN Special Rapporteur on the right to adequate housing put it:
…housing is not adequate if the specific needs of disadvantaged and marginalised groups are not taken into account.
Children have a right to adequate housing under Article 27(3) of the UNCRC which states:
3. States Parties, in accordance with national conditions and within their means, shall take appropriate measures to assist parents and others responsible for the child to implement this right and shall in case of need provide material assistance and support programmes, particularly with regard to nutrition, clothing and housing.
The UNCRC also accords disabled children with specific additional rights in Article 23:
1. States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community.
2. States Parties recognize the right of the disabled child to special care and shall encourage and ensure the extension, subject to available resources, to the eligible child and those responsible for his or her care, of assistance for which application is made and which is appropriate to the child’s condition and to the circumstances of the parents or others caring for the child.
3. Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child’s achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development…
Children’s right to housing must also be understood in the context of the full range of rights contained within the UNCRC, but the following are particularly relevant:
- Article 9 – the right not to be separated from parents. This would include where a hospital stay has to be extended due to unsuitable housing.
- Article 15 – the right to freedom of association and freedom of peaceful assembly. This includes the right to form and maintain friendships.
- Article 20 – the rights of care experienced children
- Article 24 – the right to the highest attainable standard of health
- Article 26 – the right to benefit from social security
- Articles 28 and 29 – the right to an education
- Article 31 – the right to rest and leisure, to engage in play and leisure activities
The proposed standards for non-adapted housing
We are concerned that the working assumptions for the standards in Part 1 are based on a 2-bedroom flat or a two-storey, 3-bedroom family home. Neither of these are likely to be suitable for many families with a disabled child, particularly if there are other children in the family.
We recognise that ensuring that all new properties meet the proposed standards will benefit disabled children, whether it be through making the homes of friends and relatives more accessible or reducing the urgency of a move when there is a change in a disabled child’s needs or when a baby has complex medical needs.
But these proposed standards will not address the long-standing issue of an extreme shortage of fully accessible family homes, particularly larger homes, to meet the needs of disabled children.
Disabled children, particularly those with complex medical needs, often have a range of equipment to support them as they grow and develop. This takes up space and often prevents them from sharing a room with a sibling. The Royal College of Occupational Therapists, in their report on their 2023 survey of children’s Occupational Therapists, called on the government to: “Urgently addressing the housing needs of disabled children and young people to ensure their health, safety and development and that of their families in the short and long term”.
Conditions which result in frequent waking, or which require medical procedures during the night or equipment such as ventilators will also mean the disabled child needs their own room. This means that the “typical” 2-bedroom flat built to the proposed standard will not be suitable for many families with a disabled child.
Likewise, a two-storey house is not suitable for a family with a child who is unable to independently climb stairs. Disabled children should have full access to their whole house – to move around independently if they are able and to visit siblings or parents in their bedrooms as part of the “full and decent life, in conditions which ensure dignity, [and] promote self-reliance” envisaged by Article 23 of the UNCRC. What the standard therefore proposes is a house that is accessible for disabled visitors – and that is to be welcomed – but not one that would meet the needs of a child with a physical disability.
Whilst not addressed by the detail in the proposed standard, the assumption in policy that children under a certain age or of the same gender can share a room is not always suitable for disabled children. In addition to the factors mentioned above, it can be important for neurodivergent children and those with some mental health conditions to have their own room, for their own wellbeing and that of their siblings.
There has been a 787% exponential increase in recorded autism diagnoses between 1998 and 2018, meaning that 10-15% of the population is now neurodiverse. It is imperative therefore that the sensory needs of autistic people, including children, are considered within the guidelines for accessible, adaptable and useable homes. Supporting autistic flourishing at home and beyond: considering and meeting the sensory needs of autistic people in housing outlines the ways in which houses need to be built and adapted to meet the needs of neurodiverse people.
Autistic people process sensory input differently, taking in vast amounts of information from the world. The more sensory input that is added, the more overwhelmed autistic people get. This can lead to meltdowns, shutdowns, disturbed sleep, and high levels of anxiety. In the context of autistic children sharing bedrooms with brothers or sisters, the lack of space or control over their sensory environment can lead to decreased mental health and increased distressed behaviours which can result in violence to themselves or others.
To meet neurodivergent children’s right to the highest attainable standard of health through their right to housing, it is important that the guidelines do not presume shared bedrooms for these children, that there are sufficient larger homes to meet demand and public housing rules around bedroom sharing and overcrowding are changed to reflect the needs of autistic children.
We have gathered the following case studies from stakeholders which we hope will illustrate the importance of understanding the full impact on children’s rights of the proposed changes to the standards.
Kindred is an advocacy service for parents of children with complex needs. In the year ending 31 March 2023, they supported 744 families. Of these families, 77 were in housing that did not meet the needs of their disabled children and Kindred were supporting them to achieve a move or adaptations to their home. They were only successful for 8 of these families during the reporting year. This suggests that many families are living for years in housing which is detrimental to care for their child.
Kindred report that they frequently find that parents are sleeping in the living room to allow siblings to have their own room. Many parents also carry on sleeping with a child with additional needs in their bedroom. This is detrimental to sleep pattern for the child and the adult.
They told us that where adolescents have mental health needs this can cause a crisis in the family housing situation. There is currently no inpatient psychiatric care for children and young people with a learning disability in Scotland. This means that children and young people remain distressed and under-treated at home or in unsuitable units, sometimes with the high use of sedative medication and restraint. In these situations, the child or young person can cause a lot of damage to the family home and siblings are at risk. Useable housing is one of the factors which can significantly reduce the risk of family breakdown particularly around transition to adult services.
Kindred also support parents who own their own home. These parents sometimes raise funds themselves for extensions (e.g. for a wet room and bedroom). Although local authorities will contribute up to 80% of the cost of extensions for a person with a disability, the process of planning permission and grant approval is long and onerous.
In summary, the challenges with accessibility, adaptability, and usability of housing for disabled children that Kindred provide advocacy for are:
- Families of children with ASD/ADHD who require separate rooms for siblings
- Children with complex needs requiring more room for equipment
- Families who own their own home building extensions and experiencing delays due to planning and grants processes
- Families with no recourse to public funds living in unsuitable accommodation (e.g. hotels where they need to move frequently)
Kindred have provided the following anonymised case studies.
Robert is 4 years old and lives with his mum Agata, dad Stephan and older brother Paul (who is 12). The family have a two-bedroom house. Robert has autism and frequently becomes overwhelmed. When he is dysregulated, he can kick and bite his brother. He has poor sleep and can be up from 2am (three or four times a week). Agata and Stephan have decided that his older brother Paul needs a bedroom of his own. Robert sleeps in the same room as his mum. Dad works on night shifts and often sleeps in the living room.
Paul is a 6-year-old boy, who was born with cerebral palsy, epilepsy and has complex health needs. He lives with his parents and sister in a small town. Paul’s mum has had to give up her corporate job to care for the family at home and the demands of that take a toll on both her and her husband’s mental health and family finances. Additional health needs also bring additional costs. From the extra equipment, like specialist car seats, hoists etc to having to purchase a new house and jump through many hoops to get statutory financial support to make adaptations to the house to meet Paul’s needs. The disruption caused by having to find space for all Paul’s specialist equipment is evident. The front room (which doubles as the dining space) and Paul’s bedroom are packed, leaving little space for the family. As Paul has epilepsy, this puts more pressure on his mum to stay alert through the night as Paul is also a light sleeper. This is something which mainly falls on his mum as his dad needs to be up early for work, as he is the sole breadwinner now.
The adaptations that are needed to the house are costly and the family need to pay in advance of any statutory financial support, which won’t cover all their costs. Kindred has been able to signpost the family to other organisations which has given his mum space to cope with the huge demands made of her.
When Kindred first started working with the family, they were living in a privately rented, damp, one bedroom, basement flat. Abdul’s medical team were concerned that the family’s living conditions were extremely detrimental to Abdul’s health and were in fact life threatening. Abdul was hospitalised many times with severe chest and respiratory problems. By October the local council had identified a property that was suitable for the family. However, there were difficulties and the Kindred advocacy worker spent almost 4 months writing, phoning, and emailing senior managers to have the repairs and adaptations made to the property. In March, the family moved into their new, warm and dry property.
Housing Options Scotland is a charity which helps disabled people, older adults and members of the Armed Forces community find a home that suits their needs. They provided the following anonymised case studies from their brokerage team.
- The Smiths
The Smiths are a family of five, living in a small socially rented flat. They have three children ages 12, 9 & 5 who are sharing one bedroom. One child has seizures, one has autism and the third has a muscle wasting disease. The latter was offered a powered wheelchair but can’t accept it as there is no space. They are currently using a self-propelled chair, which will greatly hinder their independence. Unfortunately for the Smiths, an offer of alternative, larger housing has not been made.
Jonas has two children and is currently renting a 2-bedroom property from a Council in Scotland. Jonas’ son, Tom has autism and cannot share a bedroom with his sister. The Council’s policy is that you need to be 2 bedrooms short to get overcrowding points, so Jonas and his children are seen as suitably housed.
Devi is a social tenant. She is a lone parent with two young children of 10 and 8, both of whom are on the autistic spectrum. They are unable to share a bedroom owing to meltdowns, sleeplessness and OCD routines. Devi is sleeping in the living room which takes a toll on her health. They have “Silver” priority but little prospect of a move.
Hospital Discharge teams in children’s hospitals are responsible for arranging the safe discharge of children with complex health needs. They report that many children experience delayed discharge because of a lack of appropriate housing to meet their needs. The rate of this occurring has increased over the past two to three years. Some children have had their discharge delayed for as long as 2 years. One hospital discharge team provided the following case studies and commented that they can be replicated several times over the last ten years and across all health boards.
Robbie is under two and suffered a spinal injury at birth. They are paralysed from the neck down, ventilated 24 hours a day and tube fed. They are fully dependent for all care needs and at high risk of death from disconnection from the ventilator. As a result, they will always require constant supervision from an appropriately trained parent or carer.
Robbie has never been home until now. To meet Robbie’s care needs, the family needed a house which provided access to a living area that was all on one level and could accommodate an awake carer that has access to the necessary equipment. This equipment takes up a lot of space and storage as it meets Robbie’s respiratory support, feeding and rehab needs as well as communication aids and manual handling.
When Robbie was born their parents lived in a one bedroom private let. They applied for council housing when Robbie was about six months old. It took five months to establish the family’s top priority rating for re-housing and a further month for an offer to be made for a suitable property. This property was a new build and not yet complete. The family moved into the accommodation 10 months after they first applied resulting in Robbie spending 10 months longer in hospital than required.
- The Ali family
The Ali family are refugees with three children under the age of 7, all of whom have additional support needs. The two youngest children have breathing problems that require ventilatory support overnight. The family live in a two-bedroom house which is overcrowded due to equipment but also means that all the children need to share a bedroom, which does not meet their medical needs. They are in the application process to increase their priority status due to the overcrowding and lack of space for equipment. It is unknown if their application for priority status will be successful and if it is, how long it will take for them to be allocated a suitable house.
We note that statistics on new home building are reported on the basis of housing for older people and those with disabilities, with no disaggregation on the basis of size of home. It is not clear what proportion of adapted homes (wheelchair accessible or ambulant disabled) are family homes of 3 or 4 bedrooms. Our understanding is that it is low. We would therefore call on the Scottish Government to ensure that data is gathered and reported in a way to allow monitoring of this on an ongoing basis.
For further information, please contact Megan Farr, Policy Officer at firstname.lastname@example.org or 07803 874 774
 United Nations Convention on the Rights of People with Disabilities. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html
 International Covenant on Economic Social and Cultural Rights. https://www.ohchr.org/en/instruments-mechanisms/instruments/international-covenant-economic-social-and-cultural-rights
 Committee on Economic, Social and Cultural Rights. 1991. General Comment 4: The right to adequate housing. Paragraph 8(e) https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=INT%2FCESCR%2FGEC%2F4759&Lang=en
 Special Rapporteur on the right to adequate housing. The human right to adequate housing. https://www.ohchr.org/en/special-procedures/sr-housing/human-right-adequate-housing
 Royal College of Occupational Therapists. 2023.
 Russell et al, 2021. Time trends in autism diagnosis over 20 years: a UK population-based cohort study. https://acamh.onlinelibrary.wiley.com/doi/10.1111/jcpp.13505
 Scottish Government. 2023. NAIT Adult Neurodevelopmental Pathways Report. https://www.gov.scot/publications/nait-adult-neurodevelopmental-pathways-report/pages/3/
 National Development Team in Inclusion. 2020. Supporting autistic flourishing at home and beyond. https://www.ndti.org.uk/assets/files/Housing-paper-final-formatted-v2.pdf