Are there differences in factors influencing access and continued use of assistive products for people with intellectual disabilities living in group homes?

Abstract

Background: The World Health Organization has launched a program to promote Global Cooperation on Assistive Technology (GATE) to implement those parts of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) referring to assistive technology and products. A particular vulnerable group deeply affected by health inequity affecting access to assistive products are people with intellectual disabilities. Objective: The objective of this study is to understand the barriers and facilitators to effectively access and continuously use essential assistive products for people with intellectual disabilities. Materials and methods: Face-to-face interviews with 15 adults with a mild to profound intellectual disability and 15 providers of assistive products were conducted to gain insights about current use, needs, knowledge, awareness, access, customization, funding, follow-up, social inclusion, stigma and policies around assistive products and intellectual disability. The technique of constant comparative analysis was used to analyze the data. Results and conclusion: An overview of factors is presented that fit within seven domains for access and eight domains for continuous use of assistive products for people with intellectual disabilities. It illustrates that access and continuous use are influenced by different barriers and facilitators. These different influences should be taken into account in country policies and frameworks that seek to implement the UNCRPD through assistive technology. ä IMPLICATIONS FOR REHABILITATIONProactive assessment for assistive products by health professionals is rare and the vast majority of people with intellectual disabilities depend on carers to signal the need . A lack of education for carers around available assistive products and the benefits of assistive products for people with intellectual disabilities may lead to an underutilization for this group. The paternalistic attitude of care providers towards people with intellectual disabilities limits access and use to certain (high-tech) assistive products. The segmented and disjointed aspect of public funding to support assistive products found in this study is a key issue for policymakers who aspire to adhere to implementing the UNCRPD equally in all areas of their country. ARTICLE HISTORY

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

“…Article 21 (freedom of expression and opinion, access to information): Seven studies focus on access to—and understanding of—information, as well as opportunities to use information and express their opinion [ 8 , 40 , 48 , 51 , 54 , 55 , 56 ]. From these, the following personal outcomes were extracted: information in accessible formats (e.g., easy-read format); assistive products for communication and cognition (knowledge and awareness; customization); access to the internet, its content and digital services (e.g., adapted applications, internet sites and web browsers; modifying the mouse settings or enlarging the font); technological devices adapted to the person’s specific needs (e.g., alternative mice, enlarged keyboards, touch screens, voice synthesis and recognition systems); technical support (e.g., configuring device security, securing the wireless network, installing an antivirus program, setting up the firewall, updating the operating system and software); participation in digital society (educational programs, individualized supports to understand new social interaction rules and conventions); self-advocacy (to have their voice heard, confidence to speak up, defend their health, sexual and emotional options).…”

“…Article 20 (personal mobility): Two articles [ 54 , 63 ] include specific aspects related to this right. The indicators and personal outcomes mentioned are a way to be personally mobile (availability of assistive products for mobility; knowledge and awareness about them; customization); and a way to transport across environments (i.e., adapted transport; human support and vehicle available).…”

“…Article 5 (equality and non-discrimination): Five papers [ 49 , 50 , 54 , 69 , 73 ] identify the indicators and personal outcomes of not suffering stigma; not suffering discrimination (e.g., in insurance matters, in access to health care); not experiencing rejection and denial of their individuality, adulthood and capacity.…”

“…Article 26 (habilitation and rehabilitation): 12 papers [ 40 , 48 , 49 , 50 , 51 , 54 , 66 , 67 , 73 , 83 , 84 , 85 ] focus on specific elements related to habilitation and rehabilitation, such as accessing quality efficient and specialized physical and mental health care and social care (speech therapists, psychologists, psychiatrists, physiotherapists, dentists, X-ray facilities, primary and tertiary health services); appropriate and affordable early and timely health services, interventions and care; coordination and communication between health, education and social services; health services close to home; appropriate transitions between health services (e.g., from pediatric to adult services); availability, knowledge and use of assistive devices and technologies related to habilitation and rehabilitation; health staff feeling competent to care for patients with IDD (educational curricula for health professionals about disability; availability of specialized training; avoiding misperceptions; well-trained mental health professionals in dual diagnoses); health staff’s positive attitudes (looking and directly talking to person with IDD, willing to provide them with care; showing respect); individualized and capability-based services.…”

“…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; provision of social assistance when needed; existence of personal budgets/personal assistance schemes and awareness of these by people with disability; stability of funding over time; strong supportive legislation.…”