Ageing with intellectual disabilities

The content of the participation process included three related innovation elements:

• The services model. This affects the facilities and types of services the elderly demand. But it also affects the type of professionals involved in providing the services. Finally, the measurement of the relevance and impact of the services is subject of review.
• The facilities’ design. Residences need adaptation, but also the Foundation must develop new facilities to train and fulfil the needs of ageing disabled.
• The relationships with other agents. If the earlier two might be related to services innovation, this concerns the processes and how the Foundation launches and consolidates new relationships with different public and private agents to help elderly sustain themselves and fulfil their rights to autonomy and proper care.

No digital transformation process involved.

The ageing project of Fundación Alas is centered in solving wicked problems associated with the longer life-expectancy of people with disabilities (Plena inclusión, 2014) thanks to the improvement on their life conditions and treatments. Far from technological, the types of social innovations the foundation designs and executes are related to a public function that public agents in Madrid (Spain) have traditionally left to private agents. Indeed, at least in Madrid, the public agents have failed providing adequate services to this community and currently acts as mere funder of private initiatives – mostly supported through conventional tenders. The effectiveness of the intervention strategies for elderly with intellectual disabilities depends on the ability of the technical teams to develop and communicate clearly the plans to other professionals (Morgan, 1990; Shaddock et al., 1986 in Novell, et al., 2008), but also on the capacity, training and motivation of professionals who have the direct responsibility to carry them out (Aylward, Schloss , Alper and Green, 1995 in Novell, et al., 2008), as well as the coordination between all of them.

Dimension: Physical fitness

• Lack of health care standards
• Communication and identification difficulties of pain threshold
• Participation in the promotion and living a healthy lifestyle
• Lack of specific resources and standardised protocols for the evaluation of elderly with   intellectual disabilities
• Insufficient training of socio-health professionals in ageing issues and intellectual   disabilities
• Insufficient physical therapy

Dimension: Emotional well-being

• Integration of the information from the field of dual diagnosis[1] and the gerontology   area[2]
• Environmental situations having a negative impact on the adaptive abilities of elderly or   could raise behavioural problems or stress
• Training professionals in ​​ageing and dual diagnosis

Dimension: Material well-being

• Adaptation to the needs of elderly with intellectual disabilities
• Less opportunities to participate in meaningful leisure activities, less stimulating   environments, lack of staff preparation and relationship difficulties between individuals
• Lack of experiences with the rest of the ageing population
• Segregated and expensive environments
• Existing geriatric or gerontological intervention models are scarce and are not easily   transferable to services
• Decreased productivity associated with ageing, difficulty to make personal and social   adjustments beyond the 50
• Few work or occupational itineraries to support elderly with this condition
• Pension plans different to those available for those without disabilities
• Lack of assessments due to disability and ageing to maximise compensation when   leaving   work activity

Dimension: Human Rights

• Physical access
• Access to information
• Disability recognition associated with ageing
• Right to decide where and with whom to live
• Right to health, training and rehabilitation
• Barriers to keeping an adequate standard of living and social protection
• Right to develop and keep plans and goals

Dimension: Self determination

• Lack of information necessary to identify or recognise abuses
• Transition to retirement getting actively involved in self-care

Dimension: Social inclusion

• Opportunities to participate actively in their environment
• Lack of relevant social goals and aspirations
• Greater contact with people without disabilities and greater autonomy
• Lack of promotion of the inclusion of the elder with intellectual disability by the support  professionals
• Ageing of the main carers
• Lack of coherence in the implementation of an inclusive model
• Shortage of personnel

Dimension: Interpersonal relationships

• Continuous changes of professionals
• Housing size
• Physical and social barriers
• Long stories of institutionalisation and change of services that make it impossible to   consolidate a social network
• Behavioural problems
• Adaptive and communication skills

Dimension: Personal development

• Feeling of ‘disconnection’ with the activities carried out in earlier stages
• Favouring free-time of their main carers
• Lack of a process of active ageing
• Lack of services and opportunities that promote rest, fun and personal development

[1] For example, to know the most frequent psychiatric conditions in the population with ID or specific etiologies that present a higher risk of certain types of mental illness. [2] Identification of which behavioural and psychological changes are associated to the overall ageing process.

The institutional needs and problems detected in the main services that might affect the project of Fundación Alas are summarised below (Novell, et al., 2008):

Services of homes-residence / supervised homes

Personnel ratios are insufficient, both in residential homes and in homes, when it comes to addressing needs arising from cognitive deficits, behavioural issues and the functional deficits associated with ageing.

Occupational Centres

The ageing process generates continuous adaptation needs that pose an opportunity for the innovation of these services. Most generally, personnel in the occupational centres are not well prepared to carry out the work of Psycho-geriatric Day Centres – e.g., they are not provided with physiotherapy services. These centres usually lack transition services from the world of work towards a compatible satisfactory activity able to meet the needs of people who cannot continue in Special Employment Centre but still can work and get paid and that enhances their skills.

Leisure and educational activities

Elderly with intellectual disabilities need enough and varied social activities, adjusted to their age, to choose from according to preferences and accessibility. Enjoying free time and leisure is one of the most rewarding activities and making them accessible is a good indicator of the quality of a service. The elder with disability has motor and cognitive difficulties to self-organise and, depending on the level of disability, also to enjoy leisure. Promoting adapted leisure for elderly would benefit them normalising activities and improving adaptive behaviours, socialisation, fun and distraction, and quality of life.

Individual level

The need to enhance their self-esteem and personal growth, fighting loneliness; the need of full social acceptance; and the need to make decisions about aspects of one’s life in the most similar way possible to people without disabilities.

Dimension: Physical fitness

• Sleep, food, activities of daily living
• Health (physical and mental), health care and access to socio-health services (including technical aids)

Dimension: Emotional well-being

• Community environments, ordinary or supported employment, significant learning opportunities, absence of problems social or emotional behaviour and support
• Depression and anxiety, stressors – social exclusion, stigmatisation or lack of social support
• Healthy lifestyle and food, access to valued activities, health and well-being in the housing environment, adequate emotional response to separation or death of parents

Dimension: Material well-being

• Economic status (i.e., having enough income to buy what one needs or likes), employment (i.e., having decent work and an adequate working environment), or housing (i.e., having a comfortable home where one feels comfortable)
• Adequate standard of living
• Social protection
• Searching, getting, keeping the employment and having the possibility of returning to it
• Having the right to choose where and with whom to live

Dimension: Human rights

• Rights that may be violated at ageing
• Proposals to empower disabled elderly to educate them to self-manage their lives and defend their rights

Dimension: Self-determination

• Autonomy or personal control self-regulation or setting own goals and values
• Training or psychological competence
• Self-realisation or own elections

Dimension: Social inclusion

• Active participation of the elderly in their community
• Residence or housing options that favour social inclusion during ageing

Dimension: Interpersonal relationships

• Natural supports: significant relationships with family and friends
• Interpersonal relationships through leisure experiences integrated into the community
• Collaboration with community services belonging to the network of services for the elderly
• Interpersonal relationships (friends, partners): emotional, sexual and social

Dimension: Personal development

• Education, personal competence, performance, functional skills
• Use of support technology and other alternative communication systems

This case presents the collaboration process of a private institution with users and their families to provide a public service that is not properly covered by the public sector. It answers a pressing concern of the families and the elderly with disabilities, as this latter group has become a relevant part of the total disabled population. This is not the normal case of a PSINSI, as the public agent is just one of the actors involved by the initiating agents, and mostly covers what relates to the overarching legal or normative framework of the caring for the ageing disabled people. Besides those differences with other social innovation cases, we appreciate similarities that even in the absence of a strong public actor are well covered by the PSINSI theoretical framework. This is relevant as it may indicate that the focus on the social innovation aspect might drive agents, independent of their ascription, to form similar types of networks.