adopted by the Committee on the Rehabilitation and Integration of People with disabilities (Partial Agreement) (CD-P-RR) by correspondence on 31 December 2007

1. Introduction

These Recommendations and Guidelines have arisen out of a commitment to secure the rights of children with disabilities, including those who are currently living in institutions. They reflect a growing international consensus that institutional forms of provision are not compatible with the exercise of children’s rights. States are therefore urged to develop coherent systems of community support as a replacement for these forms of care so that disabled children can live at home with their families.

Because this is such a fundamental issue, it is important that governments take steps to replace institutional provision with community-based services within a reasonable timeframe and take a comprehensive approach, which includes the following 4 main strategies:

a. Prevention of institutionalisation (helping those, who may be in danger of being placed in an institution, find alternative solutions in order not to get placed);

b. Prevention of any prolongation of an initially anticipated short-term stay;

c. Deinstitutionalisation of those who are currently in institutions;

d. Creation of community-based services;

Deinstitutionalisation is a long-term process which requires government action, strategic planning and coordination at national, regional and local levels. Initially it may be necessary to run services in parallel, so that a range of high quality, properly regulated community-based options can be built up alongside a gradual but large-scale disinvestment in institutions. The rights of children with disabilities and vulnerable young adults who remain in institutional services should be assured throughout this process.

The process of transition has to be well planned and structured. Transitional funding should be set aside internally or sought from international bodies, in order to facilitate and maintain the momentum of this process. Countries that experience difficulties should feel entitled to seek know-how or other forms of support from the international community.

Institutions are often large scale, segregated settings, in which children have little or no contact with their families or communities. In exceptional cases (for example in cases where there has been abuse or neglect), when a child cannot live in their own or a foster family, small homely settings, that are as near to a family environment as possible, should be provided as an alternative to institutional forms of care.

Community services take many forms. A broad range of mainstream and specialist community service provision to prevent any removal of children with disabilities from their natural environment and assist in their integration is discussed below.

When designing community services and as the latter develop in parallel to the process of deinstitutionalisation, Member states may consider taking into account the need to:

• introduce a strategy for deinstitutionalisation (alternative preventive policy measures) and provide alternatives to institutionalisation, including training programmes for staff as well as families;

• analyse the path followed by the child from birth in order to identify all the crucial and strategic junctures and see all the "knots" which, by default, will shape the child's future, the dangerous crossroads that lead him or her towards life in an institution. The purpose here is to take more effective action to pinpoint the opportunities for preventing avoidable institutionalisation in future, which is an unacceptable solution. Member states could then introduce changes to their legislation and new practices to get round these crossroads;

• analyse, with the view to identifying the strategic junctures, the path of a child with disabilities based on a set of specific questions;

• support families with a disabled child (financial support, psychological support, help, etc.);

• accept the temporary costs engendered by deinstitutionalisation if it results in a more fulfilling life for the child with disabilities; deinstitutionalisation in fact requires temporary additional investment since until it is completed, two systems have to be maintained;

• frame a strategic plan to make these Recommendations and Guidelines operational. This also means being able to set up a specific agenda and a timetable with a number of stages, which is essential if the model for change is to function properly;

• train the professionals concerned in order to bring about a paradigm (viewpoint) shift;

• take note of the fact that deinstitutionalisation should be considered as an on-going process that should be constantly reviewed and bear in mind the need to be vigilant in order to avoid returning to institutionalisation.

This document is composed of three parts: firstly it sets out the involvement of the Council of Europe to date and the steps which have led up to these Recommendations and Guidelines; secondly it puts forward the case for change to community-based provision for children with disabilities which is firmly rooted in respect for their human rights, and thirdly it presents the main elements of a strategic approach to achieve these changes within a reasonable timeframe.

2. The commitment to children’s rights

The Council of Europe is committed to a children’s rights perspective and to the eradication of violence against all children, including disabled children. This was stated clearly in the European Convention on the exercise of children’s rights (ETS No. 160), and reiterated at the Third Summit of Heads of State and Government of the Council of Europe member states, held in Warsaw in May 2005. The Summit also called for the preparation of a ten-year, pan-European Disability Action Plan, which was adopted by the Council of Europe’s Committee of Ministers on 5 April 2006 (Recommendation Rec(2006)5 of the Committee of Ministers to member states on the Council of Europe Action Plan to promote the rights and full participation of people with disabilities in society: improving the quality of life of people with disabilities in Europe 2006-2015). In this Action Plan, the protection and promotion of the rights and dignity of children with disabilities is a major concern.

These rights are also set out as fundamental principles underpinning key international conventions and legal instruments, including the European Convention on Human Rights; the revised European Social Charter and the United Nations Convention on the Rights of the Child. Important provisions within these legal instruments were highlighted at the conference “Human Rights – Disability - Children: towards international instruments for disability rights - the special case of disabled children” organised by the Council of Europe in November 2004 under the aegis of the Norwegian Chairmanship of the Committee of Ministers of the Council of Europe.¹

This conference led directly to the establishment of the Council of Europe Ad hoc Group of Experts on Community Living (Deinstitutionalisation) of Children with disabilities (P-RR-CLCD) which reflects the view, shared among member states, that institutional care is incompatible with the exercise of children’s rights and should be phased out. The group’s work also builds on that of a similar group of experts working in 2003-2004, who explored the needs of children and adults with disabilities in need of a high level of support. Their report concluded that all disabled children, including those with complex conditions or high support needs, could benefit from, and should be entitled to access, flexible community-based service provision instead of institutionalised services. That group also set forth a model of provision that is explicitly designed to support family relationships and to allow children with disabilities to grow and develop within their own communities.²

Committee of Ministers Recommendation Rec (2005)5 on the rights of children living in residential institutions was adopted in April 2005. This Recommendation has been well received among member states, especially those that are actively addressing the complex and serious issues facing children currently placed in institutional settings. The Recommendation and supplementary report have been widely disseminated through conferences across Europe. Three international events, with broad representation from member states of the Council of Europe merit special mention for their focus on children living in residential institutions: the Ljubljana Regional Consultation for the UN Study on Violence held in July 2005³; the UN Committee on the Rights of the Child Day of General Discussion held in September 2005⁴, and the Bucharest Conference on Child Rights held in February 2006⁵.

The European Convention on Contact concerning children (ETS No 192) and Recommendation No. R (98)8 on Children’s Participation in Family and Social Life, clearly state that all children have rights and that disabled children have the same rights as other children even though they may need different kinds of assistance in order to exercise these freely.

Most importantly they have the right to live in their own families and in their own communities where they should be able to access education, health care and vocational training on the same basis as their peers. Institutional provision therefore creates an environment within which disabled children’s rights are routinely abused. This lies at the heart of the international commitment to change.

The rights of parents are also enshrined within the European Convention on Contact concerning Children (ETS 192) stating that they have the responsibility to bring up their own children and the duty to meet their basic needs. Families contribute to the care and to the education of their children, passing on important skills, emotional and spiritual values. They are entitled to choose the manner in which they carry out their responsibilities but they must act, and make decisions, in the child’s long-term interests, exercising their parental rights “for but not over their children”. Parents of children with disabilities often develop considerable expertise and they should be recognised as expert stakeholders in the arrangements that are made on their children’s behalf.

The State, for its part, has a responsibility to support families of disabled children so that they can be cared for at home without the need for an institutional placement. Governments should exercise this responsibility through the design and funding of a range of high quality services from which families can put together a package of care that meets their child’s needs and which is compatible with the needs of other family members.

Disabled children, in line with other children, should not be separated from their parents unless there are very exceptional circumstances, such as abuse or neglect, which make this unavoidable. In these cases, when it is deemed to be in the child’s best interests, public authorities should step in to ensure that the child’s human rights as specified under the Convention are upheld, and/or that protective action is taken, using the same legislative frameworks as would be used for any other child. Governments are also reminded of Article 3 of the UN Convention on the Rights of the Child (Resolution 44/25, UN General Assembly, 20 November 1989) which states that where there are disputes or conflicting interests, the interests of the child will always take precedence.

Moreover, while this transition is taking place, the commitment to children’s rights applies equally to children who currently live in institutions, or in other forms of substitute care. These children cannot be overlooked or marginalised while new services are being put in place. Hence, in the words of a recent UNICEF report⁶, the overarching commitment is to “children’s social integration as holders of rights” (op cit p9).

Since 2002, the European Union Daphne Project has worked closely with experts from the University of Birmingham, United Kingdom, on a project entitled “Mapping the number and characteristics of children under three in institutions across Europe at risk of harm”. This project is the first to examine the factors leading to institutionalisation, the numbers of children involved and the outcomes for those children. The study concluded that young children were at risk “of harm in terms of attachment disorder, developmental delay and neural atrophy in the developing brain… [given which] NO child under three years should be placed in a residential care institution without a parent or primary caregiver.” As a result of their work, there is now widespread acknowledgment that institutional placement is particularly inappropriate for young children who require affection and attention from consistent adult caregivers.⁷

The UN Convention on the Rights of Persons with Disabilities (Resolution 61/106, UN General Assembly, 13 December 2006) stresses the rights of children with disabilities to be treated on an equal basis as other children especially where they face additional disadvantages on account of gender, armed conflict, social exclusion or poverty. This Convention emphasises the rights of girls and the importance of safeguarding their reproductive rights. It also makes clear that where any child, and that includes any disabled child, is involved in court proceedings concerning family matters such as adoption, wardship, fostering, or medical intervention, their best long-term interests will take precedence over any other considerations. Article 7 of this Convention also stresses that disabled children must be enabled to express themselves on matters of concern to them, that the services they use should be fully accessible and that they be given the benefit of assistive technology on the basis of need, not ability to pay. States are urged to conduct public awareness campaigns that “nurture receptiveness” to the inclusion of disabled children and to collective responsibility for upholding their rights to a life within the community. These commitments are echoed in the Council of Europe Disability Action Plan, launched in St Petersburg under the aegis of the Russian Chairmanship of the Committee of Ministers of the Council of Europe in co-operation with the Norwegian Chairmanship of the Nordic Council of Ministers in September 2006, which promotes the human rights-based, anti-discriminatory approach to improving the lives of all people with disabilities, including children and those with enduring and/or complex needs.

3. Recommendations and Guidelines

The following Recommendations and Guidelines presuppose a major change in perceptions of people with disabilities and also a major change in practices.

Deinstitutionalisation requires a number of general actions to support the strategic approach at national level, involving all the stakeholders in order to allow for the effective implementation of the specific Recommendations and Guidelines which appear below.

Amongst those are certain actions which have to be considered as a prerequisite for the main strategies presented in this document: prevention of institutionalisation (helping those, who may be in danger of being placed in an institution, find alternative solutions in order not to get placed); prevention of prolongation of an initially anticipated short-term stay; deinstitutionalisation of those who are currently in institutions; creation of community-based services).

These general actions are decisive for the success of the measures taken in a reform process. The first is the assessment of children’s needs, which should be reviewed on a regular basis. It is important to make sure that each child benefits from an appropriate needs assessment, based on which individualised plans are established for the development to ensure his or her social inclusion (education, health, social protection, etc.). Community-based services should respond to these identified needs. Second, a strong legal or legislative base and quality standards for service provision should be provided. Quality of service provision should be regularly reviewed or assessed. Third, adequate resourcing (human, financial), and staff re-training as well as public awareness raising are equally important. Finally, assessment of the existing services and the needs of all other stakeholders, such as service providers, families, etc, should be carried out.

These actions should be reinforced by specific measures tailored to the following recommendations:

3.1. General Framework

3.1.1. All disabled children should live with their own family unless there are exceptional circumstances which cut across this: a national action plan and a timetable should therefore be drawn up to phase out new institutional placements and replace these forms of care with a comprehensive network of community provision

Long-term planning involving all stakeholders will be needed to ensure that children with disabilities are able to exercise the same rights as other children, including the right to a family life, and the means to access health care, education, vocational training and leisure on the same basis as other children. Governments should discourage the building of new institutions by not approving and funding proposals for institutional types of provision. The planning should involve, in particular, government representatives covering all policy areas touching upon the lives of children with disabilities, as set out in Recommendation Rec(2006)5 of the Committee of Ministers to member states on the Council of Europe Action Plan to promote the rights and full participation of people with disabilities in society: improving the quality of life of people with disabilities in Europe 2006-2015.

The following should be taken into account:

• Announcing the diagnosis;

• Mutual aid programme for parents;

• Provision of various services (support for families, psychosocial support, financial support, educational support, pedagogical support, etc.);

• Appropriate consideration of the individual needs of children and their families;

• Various accessible and available respite measures to prevent crises;

• Continuity of services and planning of transitions (childhood/ adolescence, pre-school/school, school/adulthood);

• Promoting and supporting active involvement of and ownership by families.

Some children with disabilities may need more intensive, or more specialised, service provision in order to meet their needs but this should be seen as a spur to the development of high quality community-based support services and not as a barrier to their inclusion in ordinary settings. Occasionally a disabled child will need to live away from home for a short time to receive very specialised support, treatment or health care. Such care should be provided in a form that is homely, local and designed to maintain family ties and social networks. Placements should be reviewed regularly and last only as long as it is in the child’s best interests to be placed away from home.

3.1.2. Each Member state should adopt a coherent and comprehensive strategic approach, defining the distinct responsibilities of national, regional and local governments. A cooperative framework, involving all stakeholders, should be established to develop a network of service provision that meets the needs of children with disabilities alongside other children in their local communities

Delivering on this agenda is difficult and complex. It presupposes positive commitment and a definition of the roles and responsibilities of the different players. It requires the provision of formal and informal guaranties, regulatory frameworks, legal mechanisms and financial support by the local, regional and federal/national authorities. For children with disabilities in need of a high level of support, the “delivery provision needs to be strengthened in order to respond without departing from a model of community-based services and equitable access to mainstream provision”⁸.

3.1.3. Member states should adopt principles of inclusion and universal design in relation to all public facilities designed for children and all publicly-funded housing and neighbourhood projects

Mainstreaming or sector responsibility requires health, education and social care agencies to take children with disabilities into account in all their planning and service delivery from its inception. Implementing principles of universal design throughout will ensure that all provision is accessible and flexible from the outset. Transport systems in particular should be accessible to all children and adults whether or not they have disabilities.

3.1.4. Member states should earmark funds for research, monitoring and evaluation

As a first step in developing a research infrastructure, Member states should produce an authoritative overview of their country’s provision for children with disabilities and of those who remain in institutional settings, together with an audit of the community-based provision they have in place.

By mapping the needs of disabled children and their families and by learning about the pressures which lead families to seek placements away from home at particular ages or stages in their disabled child’s development, the authorities in each country can evaluate which aspects of community provision need to be strengthened. A coherent audit should include the number of children currently living in institutions, waiting lists and the rate of admissions together with factors which have led to these placements. Government departments should be able to make an analysis of the pressures which currently exist when families seek to look after their disabled children at home and of the barriers which prevent them from using mainstream services.

3.2. Prevention of institutionalisation

Member states should do their utmost to prevent the creation of new institutions and new placements of children with disabilities in institutions.

3.2.1. A clear legislative framework and timetable for change

Member States are at very different stages in their work to replace institutional, segregated care. Some Member States and NGOs have already incorporated important elements of Recommendation Rec (2005)5 on the rights of children living in residential institutions into action programmes concerning children in care and into their provision for community services and support, while others will need to put forward significant legal changes as well as shifts in attitude and resources. Some states will need to enact specific legislation mandating the authorities responsible for creating new networks of community-based provision and setting a deadline at which point the admission of children to institutional forms of care will cease. In order to achieve this goal, all states should build on previous commitments to anti-discriminatory practice and Universal Design. Where appropriate, links should be made to policies addressing poverty and the reduction of social exclusion. Measures in progress to improve governance of social services and NGOs working in the social care field should also be taken into account.

Coordination should be put in place to ensure that all new legislation, policy and guidance, (including measures designed to uphold the rights of all children) are applied equitably on behalf of disabled children and that a commitment to disabled children is implicit in all legislation and government protocols. One avenue for providing this kind of coordination would be to appoint, or strengthen the role of, a children’s ombudsman or commissioner, and ensure that their remit highlights their function in relation to disabled children.

Where required, governments should set out a timescale for legislative change with explicit targets and milestones against which they can monitor progress.

3.2.2. Measures to uphold the interests of children with disabilities across all relevant policy domains

The interests and needs of children with disabilities should be addressed in the work of all ministries and other responsible bodies in line with the concept of mainstreaming or sector responsibility, which means that all authorities should routinely include children and adults with disabilities in their planning and provision, at national, regional and local level. At national level there should also be coherent policies supporting the deinstitutionalisation approach across ministries (including in relation to workforce planning and support for training) to ensure that specialist expertise is developed, accredited, maintained and located appropriately. At regional or local government level there should be transparent policies for commissioning services whether in the statutory, voluntary or independent sector.

3.3. Prevention of the prolongation of an initially anticipated short-term stay

Measures should be taken to avoid any unnecessary prolongation of an initially anticipated short-term stay. Short-term stay should remain an exception, should be adequately reviewed and should not lead to institutionalisation.

In general, the measures quoted above for the prevention of institutionalisation are applicable in this situation as well, such as the regular assessment and review of children’s needs (once or twice a year), establishment of individualised development plans, and the implementation of quality standards for service provision.

3.4. Deinstitutionalisation of those currently in institutions

3.4.1. Each Member state should make sure that an access mechanism is put in place in order, in line with an assessment of needs, to direct families towards community-based provision and support

Families should be offered a multi-disciplinary assessment of their disabled child’s needs and of their own needs, on the basis of which they should be helped to access mainstream and specialised services, with help to coordinate these on behalf of their child. At present, parents may be directed towards institutional forms of care when they are first told about their child’s disability, or informed that this is the only way that they can access support or specialist interventions. These are practices which, in view of our recommendations, should no longer take place. It is necessary “to have the needs of families as providers of informal care thoroughly assessed, especially those with children with disabilities […] in need of a high level of support, with a view to providing information, training and assistance […] to enable life within the family, paying particular attention to the reconciliation of private and professional life and to gender equality”⁹.

In future, families should be encouraged to use community-based services for ordinary and special needs and assured that specialist input will be made available wherever possible without their child having to live away from home. Parents themselves may require training and information in order to meet their child’s needs and to manage their household without too much stress. It is indispensable to pay special attention to the situation of families that have a child/children with disabilities and adopt an approach that accommodates training for parents concerned, as well as to disabled parents and their participation in child-care and education tasks.

3.4.2. Member States should actively manage the transition from institutional to community-based services, anticipating resistance to change and acting to challenge prejudices and remove barriers

Transition planning is essential if governments are to succeed in creating an environment within which disabled children’s fundamental rights can be upheld. Children with disabilities should be helped to access mainstream children’s services, supplemented, wherever necessary, by enhanced coordination, additional support and specialist interventions within their local communities. This should allow them to live the same kinds of lives, and entertain the same kinds of aspirations as other children, as they grow up within their own families and communities. This commitment to ordinariness can, and should, be achieved without undermining the need for some children to receive intensive support or specialist interventions or to be accommodated in residential services for limited periods of time, but any alternatives to family living should be designed to live up to the standards we expect for all children, and be provided in homely environments within local communities.

There are many issues to be considered. Change on this scale is bound to provoke concern amongst stakeholders, whether families and/or paid workers. Change management requires there to be a series of measures to help prevent or overcome the many obstacles likely to be encountered. Parents may fear that new, more flexible, services will not be reliable or sufficient to meet their needs. Some families may not be able to support a child returning home from an institutional placement. Another example, paid workers may fear that they will lose their jobs and workers in mainstream services may have concerns that they will face unfamiliar situations that they have not been equipped to deal with. Career planning and both general and specialist training must be built into the process of change. Discussion with staff consultation bodies and trade unions should be encouraged. Involvement of all stakeholders, and targeted public information campaigns are key to successful change management. Standards should be monitored and transparent, criteria to be included in evaluations should include access, affordability and equity, quality assurance and proper coordination. In time, Member states should develop a robust regulatory framework and coherent standards against which developing services can be monitored.

There are still some perverse incentives in operation particularly in charging policies, for example parents may have to pay for services in the community while institutional placements remain free of charge. Incentives should instead be weighted towards community options. Sometimes well-meaning, but inflexible, regulations cut across the goal of making environments homely and ordinary, so that whilst safety should not be compromised for example in relation to fire precautions, it should be tempered by common sense.

It is necessary to draw up plans for the transformation/conversion of institutions, with a timetable for the transfer of resources to neighbourhood services, taking advantage of the expertise of countries which have already made these changes. The Scandinavian countries, Quebec, etc. have already done this, and have tried and tested methods which could be directly used by other states.

Help with training and active support should be provided for the managers and administrators currently responsible for drawing up and implementing conversion plans.

Financial assistance should also be used for field-training schemes for professionals, based on international exchange programmes.

3.5. Creation of community-based services

3.5.1. Each Member state should ensure the development of comprehensive programmes to support community-based living, including community-based services

Top priority should be given to funding and developing a range of community-based services for disabled children and their families with the goal of preventing children from being placed away from home through

I. timely and sensitive diagnosis;

II. well coordinated health care;

III. early intervention programmes;

IV. a range of options for mainstream and specialised education.

A comprehensive system of support for the families of disabled children should enable them to live a life characterised by the same opportunities as families who do not have a disabled child. Provision should include financial support to compensate for any additional costs incurred as a result of the child’s disability, alongside a range of ordinary day-to-day support such as day care. Respite services for carers, expert advice and counselling should be available for the disabled child’s parents and siblings, while at the same time offering developmental opportunities for the child.

In line with Recommendation Rec (2005)5 on the rights of children living in residential institutions, children have a right to regular reviews and re-assessment so that they can be offered appropriate community services.

3.5.2. Each Member state should ensure that services for children with disabilities are provided primarily in mainstream settings and that mainstreaming or sector responsibility is viewed as the norm and not the exception. Agencies serving all children should be helped to build their competence and capacity so that they can meet the needs of children with disabilities on an equitable basis

Every Member state should involve the community and make it aware of its responsibilities and obligations towards children with disabilities in general (inclusion).

In future, mainstream services, including day care, early years settings, places of worship, schools and leisure services should be required to accept children with disabilities and make available the necessary support to aid their inclusion and participation. To do otherwise would be to perpetuate discrimination against disabled children. Wherever possible, children with disabilities should be educated within the schools used by other children receiving the “support required to facilitate their effective education within the mainstream education system”¹⁰ and “in all phases of their education”¹¹.

Where special schools or units are deemed necessary or appropriate, these should be linked to ordinary schools and helped to build bridges and remain open to their local communities. Likewise, health care should be provided by mainstream health-care professionals in ordinary clinics, surgeries and hospitals. When specialist interventions are needed, the preferred option should be for these to be made available locally. Assessments and expert consultations can often be carried out in the disabled child’s normal environment, thereby avoiding excessive travelling and maximising the relevance of any advice offered.

Mainstreaming allows children with disabilities to become more integrated into their local communities and to get to know other children, who in turn learn how to relate to them and see them as children first, and as disabled children second. Another advantage is that the care, services and support made available to children with disabilities comes to be evaluated against reference points that are current for all children. For example, disabled children come to expect dental care that is like that of other children, they expect to be immunised in the same way as other children, and their families assume that they will receive the same number of hours at school and access to the same kinds of leisure opportunities as the other children. All services should be designed and offered in ways that support family ties and foster good relationships between players, whether professional or not.

Mainstream professionals in education, health and social care services should receive additional training and assistance from local centres of excellence to equip them to work with children with disabilities in general, and to support their work with specific individual children. These services should incorporate a range of personalised support to assist disabled children so that they can aim for the same milestones, goals and freedoms as their peer group. Like other young people, those with disabilities are entitled to growing independence and autonomy. They are entitled to age-appropriate possessions, to assistive technology especially with mobility and communication, in accordance with their needs.

3.5.3. Ensuring coordination and quality in service provision

Some children with disabilities need intensive support in a number of domains; health or social care, educational development, technical assistance, psychological input, help in decision-making and in managing everyday life. They require assistance to build or sustain social networks and overcome isolation or social exclusion. Disabled children, deemed to have high support needs, may require intensive assistance because of the severe or enduring nature of their needs within one of these domains or because they have interacting needs across these domains, highlighting the need for expert co-ordination between professions and agencies¹².

In order to achieve the right balance of generic and expert assistance, national governments should establish and properly resource centres of excellence, encouraging partnerships between service providers, NGOs, research and teaching institutes in order to:

• pool existing expertise on severe/complex/rare disorders and disabilities, including challenging needs;

• support regular providers of education, health care and social care so that they can set up and implement specialised support programmes;

• enhance multidisciplinary partnership working;

• disseminate research and develop the evidence base for practice, through the work of national and international centres of excellence and university affiliated programmes¹³;

• provide, or facilitate, access to advice, information, counselling and specialist health-care services for children with disabilities, and their families.

At regional level it is imperative that agencies and professions work closely together, that a proper register is kept to identify those children and families in need of support and that this information is standardised to allow information to be aggregated at regional and national level. This data should be stored in a format that allows it to be accessed in the context of international comparisons and research, subject to appropriate data protection protocols.

3.5.4. Mechanisms to include children with disabilities and their families as stakeholders in the process of service development

Involving stakeholders is not an optional extra but a fundamental shift in the way that we develop and provide services to children with disabilities and their families. Children with disabilities should have a say in the way that they are treated and, as they grow up, they should be allowed to shape their own future. They have the right to acceede little by little to their independence and authonomy. Like all young people, disabled young people should increasingly be encouraged to make decisions for themselves and take control of their day-to-day lives.

Close relatives including brothers, sisters and grandparents, should be involved in their own right, and they should be allowed to influence the development of the services they will be using. It is important that their views are heard and taken fully into account in local and national discussions. Moreover organisations of parents, and the NGOs that represent them, should be included in the development of community-based services and their expertise should be used throughout the process of transition.

4. Conclusions

Member states in their endeavours to succeed in promoting deinstitutionalisation and community living of children with disabilities should take into account the basic principles articulated in international conventions, and set out in these Recommendations and Guidelines. These are that

• All children have rights and disabled children are children first, hence disabled children have the same rights to family life, education, health care and vocational training as do all children;

• Families also have rights and bear the primary responsibility for bringing up their disabled child and meeting their needs;

• The state in turn has a responsibility to support these families so that they can bring up their disabled child at home and, in particular, “to create the necessary conditions to implement a better reconciliation of family and working life”¹⁴;

• Governments should therefore fund a range of high quality services from which the families of children with disabilities can choose an appropriate mix of support;

• In all actions concerning children the best interests of the child take precedence over other considerations and this principle should be upheld in relation to children with disabilities;

• Parents can choose how to meet their child’s needs as long as their decisions are informed by, and seen to be in, the child’s best interests;

• If a family or a service fails to work in a disabled child’s best interests, or if a disabled child is being abused or neglected, the State, acting through its public agencies and within generic child protection frameworks, should intervene to protect the child and make sure that the child’s needs are met;

• If in these exceptional circumstances care is to be provided outside the family, such care should be homely, well regulated and designed to maintain family ties.

14 Recommendation Rec(2006)19 of the Committee of Ministers to member states on policy to support positive parenting, p.5, 6.3.i.