Challenges of having a loving partner: the views of adults with intellectual disabilities

Measurable Indicators of CRPD for People with Intellectual and Developmental Disabilities within the Quality of Life Framework

“…Article 19 (living independently and being included in the community): 14 papers [ 8 , 38 , 39 , 40 , 42 , 45 , 47 , 49 , 50 , 53 , 63 , 66 , 68 , 69 ] mention personal outcomes or indicators associated with the right to live independently and be included in the community (i.e., not to be institutionalized in segregated environments, not to be restricted in options for in-home residential and other community support services). To achieve this, the papers highlighted the right to receive the necessary individualized supports (person-centered planning, individualized support to live more independently) for everyday activities to do with autonomy in the home (e.g., getting to appointments, running errands, housework, personal finances, heavy household chores, preparing meals, personal care and medical care); support from professionals (sufficient personal resources) and service providers (to organize preferred housing, help find housemates, forge social connections); in housing, to facilitate flexibility in terms of rules and staff control, freedom to move around and to arrange daily home life, enjoy own space, individualized care, small groups, living with their partner; trust and support from family (role of the family as a source of support and as facilitators of autonomy, opportunities to practice skills, avoiding overprotection); special attention to access supports during and after moving (to organize move, types of support, relationships with supporters, quality of supporters); being within walking distance of amenities and shops; support for older people with disability; control over support arrangements (choose support workers and the kind of support they receive); housing affordability; access to information on independent living experiences.…”

“…Article 27 (work and employment): Eight papers contain employment-related aspects [ 39 , 40 , 42 , 46 , 47 , 49 , 59 , 66 ]: access to the labor market; having a (local) paid job (not being refused a job, promotion or interview because of disability); safe and suitable employment; satisfaction with the employment and salary (paid on an equal basis to others); adequate provision of accommodation and employment services (e.g., hours, duty, human support); employer and employee attitudes (e.g., aware of work strengths and limitations, not considering the person disadvantaged because of disability; negative attitudes when looking for employment; ongoing disability information and awareness activities for all employees; satisfactory treatment for employees); adequate job information, training and experience (advice on alternative employment; individualized training based on needs, studies, professional experience, interests and availability; skills training to find and keep a job; individual guidance to map out potential professional pathways; assessment and guidance on job options tailored to needs profile; presence of support persons to mediate with the company; tracking recruitment to make adjustments); employment as a way to meet people and friends; work-life balance measures (i.e., childcare while they work).…”

“…Some authors have tried to differentiate between the techniques, arguing that the emancipatory approach is achieved when the initiative and research topic is proposed by people with disabilities, and it is they who control the research, while the participative approach places greater emphasis on the representation of people with disabilities at all stages of the research process [34,35]. The most common ways for people with ID to participate in these studies are by providing their views and opinions through focus groups, structured interviews, and workshops [35][36][37][38]; by acting not only as study participants, but also as advisory committee members and co-researchers [39,40], making it essential that they receive research training [41]. The most frequently cited limitations allude to the challenge of remaining inclusive throughout data collection and analysis, together with including people with complex support needs, such as those with profound and multiple disabilities or who use alternative or augmentative communication approaches.…”

“…• Article 23 (respect for home and the family): 10 articles included in the review [8,39,40,49,[57][58][59][60][61][62] refer to the right to have opportunities to meet people, establishing relationships, having friends, meeting the right person, and having a partner relationship (taking risks to be with the person they want, opposing control of the family and restrictive service regulations, receiving support without being treated as children or considered asexual or unable to raise children, choosing their sexual orientation, being listened to about their needs); to marry and found a family (retain their fertility on an equal basis with others, avoiding forced sterilization and covert contraception, making their own reproductive and sexual choices, deciding on the number of children to have); to keep their own children with them (i.e., receiving specific supports for the wellbeing of both children and parents with disabilities, obtaining legal custody of the children in case of divorce, avoiding the separation of children from their parents against their will on the basis of a disability, or denial of their rights as fathers/mothers); to receive sexual information, guidance, and support in caring for their children (e.g., basic care, nutrition, health, education; home-based learning and flexible support services over the long-term that are evidence-based, tailored to individual needs, and built on the strengths of each parent and family; monitoring of new needs); to be able to adopt and foster, and to access assisted reproduction; guidance and training for families and professionals who provide evidence-based methods and non-discriminatory support in sexuality (preventing negative attitudes of professionals and families toward sexuality, such as discouraging marriage and parenting, restricting sexual expression; disapproving relationships, allowing platonic but not intimate relationships); organization policy facilitating sexual experiences and comprehensive sex education programs (not only addressing biological facts but also allowing them to discuss the social and emotional aspects of relationships and sexuality, to learn about abuse and exploitation, to recognize the importance of desire and pleasure).…”

“…It points to the need for ways to enable them to successfully engage with the legal system; support from workers and agencies in their interactions with the justice system; supports from police and judicial officers (e.g., adjusting their language, regarding complaints and statements as serious and with the same weight as they would for persons without disabilities, taking time to explain the law and its application, recognizing them as full persons before the law); training police and judicial officers about IDD. [39,40,42,46,47,49,59,66]: access to the labor market; having a (local) paid job (not being refused a job, promotion or interview because of disability); safe and suitable employment; satisfaction with the employment and salary (paid on an equal basis to others); adequate provision of accommodation and employment services (e.g., hours, duty, human support); employer and employee attitudes (e.g., aware of work strengths and limitations, not considering the person disadvantaged because of disability; negative attitudes when looking for employment; ongoing disability information and awareness activities for all employees; satisfactory treatment for employees); adequate job information, training and experience (advice on alternative employment; individualized training based on needs, studies, professional experience, interests and availability; skills training to find and keep a job; individual guidance to map out potential professional pathways; assessment and guidance on job options tailored to needs profile; presence of support persons to mediate with the company; tracking recruitment to make adjustments); employment as a way to meet people and friends; work-life balance measures (i.e., childcare while they work). • Article 28 (adequate standard of living and social protection): 10 studies [8,40,43,47,53,54,59,66,67,69] specify personal outcomes or indicators associated with this Article: financial independence (adequate subsistence base); sufficient financial income to access housing (housing affordability); safe, accessible and suitable housing; aid to cover the additional expenses of supports and specialist care (economic support); having the necessary assistive products for environment and self-care (knowledge and awareness about them; customized); personal assistant when needed; leisure activities in people's home (e.g., listening to the radio, playing instruments, being at home with friends); saving and budgeting (including for holidays); satisfaction with income; assistance with managing money and budgeting; receiving disability benefits (not losing benefits for being employed); easing bureaucracy involved in getting personal assistance and personal budgets; flexibility of support funded; provisi...…”