Journal of Policy and Practice in Intellectual Disabilities最新文献

Disability support systems have not consistently used family-centered practices when supporting families of children with disability. Families have experienced structural and interpersonal barriers that have negatively impacted not only their child's quality of life, but also family quality of life (FQOL). The eight domains of QOL as defined by the International Association for the Scientific Study of Intellectual Disabilities [IASSID] are reflected in a family-centered model of support developed for children and young people by Microboards Australia. The Microboards for Children [MB4C] model reflects best family centered practice based on principles that integrate well with recognised FQOL domains such as family relationships, support from other people and from disability-related services, and leisure and enjoyment of life. The MB4C model aims to enhance families’ knowledge, skills, confidence, and sense of wellbeing to support them develop a vision for an active, socially connected, and happy future with their child. The model consists of a structured network of formal and informal support to enhance not only their child or young person's personal relationships, social networks, and community inclusion but also to enable parents and siblings to access education, employment and to enjoy life in their community – all indicators of FQOL. In this paper we explore how these features of MB4C policies and practice align with family-centered practice principles and with FQOL domains. We argue that the MB4C model provides an example of how FQOL may be enhanced by a holistic family-centered disability service system that works in partnership with families with disability.

This brief report proposes strategies to support qualitative research with people with intellectual disabilities on topics related to death and dying. We prepared a scoping review on methodological approaches used for qualitative research on death and dying involving participants with intellectual disabilities and a study on perceived barriers and facilitators to accessing end of life settings, conducted with co-researchers on an online video communication platform. Through conducting these two studies, we found three strategies that we believe will increase the uptake of this research for policymakers, funding bodies and other researchers. The strategies concern research agendas, structured methodological guidance, and allocation of funds. When planning out qualitative research projects about death and dying topics, people with intellectual disabilities must be on the research agendas on topics related to death and dying. To realize this obligation, stakeholders would benefit from structured methodological guidance. The design, planning, and conduct of such studies would benefit greatly from such guidance and would ideally result in the uptake of this type of research. Additionally, proper funding taking into account needed but time-consuming accommodations for participants is necessary. These strategy options aim to increase the amount of qualitative research that includes people with intellectual disabilities as participants.

Personal Emergency Response Systems (PERS) are electronic medical alert devices that help people with intellectual and developmental disabilities (IDD) receive assistance in emergencies. According to research on older adults, PERS improve health outcomes, provide people with a sense of security and peace of mind, promote independence, and prevent institutionalization. The aim of this study was to examine if, and how, states provided PERS to people with IDD in their Medicaid Home and Community Based Services (HCBS) waiver programs in fiscal year (FY) 2021. To do so, we qualitatively and quantitatively analyzed HCBS data on participant services and cost-neutrality demonstrations to examine thematic trends in how and why states offered PERS, as well as total unduplicated participants, total projected spending, projected spending per participant, reimbursement rates, and annual service provision per participant. In FY 2021, 42 waivers (39.25%) from 25 states and the District of Columbia (57.78%) projected spending $9.87 million on PERS services for 9538 people with IDD. PERS services included the installation of devices (77.78%), monthly service fees (73.61%), equipment maintenance (44.44%), and training of people with IDD or their caregivers about the equipment (41.67%). States said they provided PERS in order to prevent institutionalization (23.61%), promote independence (16.67%), and maximize mobility (11.11%). Given the potential benefits for independent living, independence, and reducing costs, as well as the disparities unearthed in this study, we believe states should expand how they provide PERS to people with IDD in HCBS and do so in a more consistent manner. This may be especially beneficial as PERS can be cost-prohibitive for many people with IDD, who frequently live in poverty, and HCBS reimbursement for technology is the top barrier to implementing technology according to IDD providers.

In this paper, we discuss the applicability of the consensus document, prepared by the Special Interest Research Group on quality of life (QoL) of the International Association for the Scientific Study of Intellectual Disabilities in August 2000, for persons with Profound Intellectual and Multiple disabilities (PIMD). We compare our findings from previous empirical research with some elements of the themes and principles of the consensus document. We will reflect (1) on the domains of QoL mentioned in the consensus document, and (2) on the assessment by proxies. We recommend reflection on the following aspects when composing a new consensus document, which includes QoL of persons with PIMD: first, reconsider whether all eight domains are useful in care practice for—and research about—persons with PIMD. We assert that the domains of health, well-being, capability to influence the environment, and also (family) relationships, are particularly relevant for the QoL of persons with PIMD and, second, accept interpretation of signals and signs by proxies in the assessment of QoL in persons with PIMD and do not value this as second best.

To report the 10-year experience of a new pediatric Down syndrome (DS) center at one of the top 10 pediatric hospitals in the United States identified by U.S. News and World Report serving children and young adults with DS. This is a retrospective cohort study design of 1812 children with DS at a single, large, pediatric referral center specializing in DS. Children were identified from the comprehensive clinic database populated by the clinic's Visit and Intake Forms and electronic medical records. The average age at initial clinic visit was 5.50 years (SD ± 5.64). Most patients had a gastrointestinal diagnosis (n = 1319, 72.8%), ophthalmologic anomaly (n = 1286, 71.0%), cardiac defect (n = 1056, 58.3%), and obstructive sleep apnea (n = 975, 53.8%). The most common referrals made for American Academy of Pediatrics DS Guidelines compliance were for labs (n = 1152), audiology (n = 1145), ophthalmology (n = 966), and cardiology (n = 491). Clinic outreach to community pediatricians to ensure compliance with guidelines was statistically impactful with audiology (2017–2020 = 59.8%; 2011–2016 = 65.5%) and sleep study referrals (2017–2020 = 17.2%; 2011–2016 = 28.0%). Over its 10 years, the DS pediatric clinic produced over 9800 department and 5250 testing or procedure referrals. The highest volume procedures were in ear, nose, and throat with tonsillectomy/adenoidectomy and pressure equalizer tubes. Our data support that the pediatric DS clinic model can positively impact the overall health measures of patients and produce significant revenue generated by referral appointments, testing, and procedures.

This article describes how rights, the United Nations Sustainable Development Goals (SDGs), and the quality of life (QOL) framework are closely interrelated. Although legislation can be used as a tool for the practical application of QOL principles, QOL assessment information is required to further develop legislation and monitor the fulfillment of laws, policies, and the SDGs. A validated QOL model, which provides a set of concepts that can be one useful way for understanding and assessing QOL, can also function to assess many of the rights and goals promulgated in the Convention on the Rights of Persons with Disabilities (CRPD) and in the SDGs. This article illustrates the overlap between the CRPD, SDGs and QOL using the #Rights4MeToo Scale, a new measurement instrument for people with intellectual and developmental disabilities (IDD). The instrument's value lies in its potential to: (a) raise awareness about the rights enshrined in the CRPD; (b) design, implement, and evaluate the effectiveness of interventions aimed at facilitating the exercise of those rights and the achievement of the SDGs; and (c) ultimately improve the QOL of people with IDD.

Diagnosing autism or ID using a gold-standard tool can be time-consuming, costly, and requires training, which is generally limited in Nigeria, and the rest of Africa. Screening, on the other hand, can be quick and effective, with minimal training depending on the tool (Iragorri & Spackman, Public Health Reviews, 2018;39(1):17), thus making the availability of short screeners a necessity in Nigeria, and the rest of Africa. We identified four screening tools through a previously completed systematic review (Nwokolo et al., Review Journal of Autism and Developmental Disorders, 2022;1–23.), two (SCQ and AQ-10) for autism and two (SCIL and CAIDS-Q) for ID, which appeared appropriate for validation for use within African nations. The Nominal Group Technique was used with a purposive group of professionals, parents, and laypersons to select and adapt the existing screening tools for autism and ID for use with older children and adolescents in Nigeria. The group examined the screening tools for cultural relevance, face and content validity. Following the discussions, items were either (1) accepted in the original form or (2) more culturally appropriate examples chosen if at least 75% of participants agreed. The group selected the SCQ for autism and the SCIL for ID. The minimum agreement on all autism and ID measures items was 84%, and this indicated the measures had face and content validity for use within Nigeria. Following the recommendations and consensus of the group, the SCQ and the SCIL 14–17 were agreed on as measures to be validated with the Nigerian adolescents, with only a small number of adjustments needed to allow for different use of language, customs and environment in the Nigerian context.

Social change is built on paradigms and models. A paradigm needs an operational action model to successfully implement the paradigm, and an operational model needs a paradigm to give it credibility and content. This article describes the Quality of Life Supports Model (QOLSM) as a major pathway for applying the quality of life (QOL) paradigm. The QOLSM integrates the concepts of QOL and individualized supports. The article describes and illustrates: (a) the four elements of the QOLSM (core values, individual and family QOL domains, systems of supports, and facilitating conditions); and (b) the use of the QOLSM in the field of intellectual and developmental disabilities (IDDs) as a framework for supports provision. The article also discusses how the QOLSM represents a value-based and actionable model that should be effective for solving problems regarding services and supports to people with IDD, developing new knowledge, making meaningful change, being evaluated, and contributing both theoretically and operationally to the field.

Switzerland is a direct democracy, so its citizens are very often called to vote on various issues. Gaining voter status is, however, a very difficult process for many Swiss citizens with intellectual disability. This research describes the voting status of people with intellectual disability in four French–speaking cantons of Switzerland. It tries to understand systemic or structural factors, such as the guardianship legislation and the legal frameworks, that might have an impact on the voting status of these people. Three hundred individuals with intellectual disability (18–72 years) took part in the study. They were recruited in 11 facilities through a full selection or a letter-cluster sampling procedure depending on the age group. A questionnaire for each participant was anonymously completed by a support person in the facilities. The questionnaire was constructed with the assistance of self–advocates with intellectual disability, as well as that of people with various roles in decisions regarding voting rights, or providing support to people with intellectual disability, in the participating cantons. Descriptive analyses have been used. The results show that on average slightly more than one person with intellectual disability out of two received voting material, and about one out of two used it. Non-receipt of voting material is significantly linked to general curatorship, higher financial allowance, living in less independent conditions and/or working in the most protective sectors. People who use their rights more are those who live in more protective environments. Having an intellectual disability implies a higher risk of being deprived of one's political rights, even when the law does not systematically prescribe such a restriction. Even a tailor-made gradual guardianship system can result in rigid applications of the law, characterized by illegitimate deprivation of rights, such as the right to vote.

Numerous countries have recognized the need for improved surveillance data on the health of persons with intellectual and developmental disabilities (IDD). Federal agencies need additional information about the prevalence and health of persons with IDD to guide decisions about policies and programs. Without such data, health inequities and health needs of people with IDD can go unrecognized and be ignored, and resources may be misdirected. The priority areas for needed information, however, have not been well documented. To determine priorities for health data for persons with IDD, we conducted focus groups with three types of stakeholders from around the United States: researchers/practitioners, adults with IDD, and family members. Focus group dialogue was coded for themes and compared across stakeholder categories. Themes common to all groups included valuing people with IDD and respecting their self-determination; affirming the need for data including longitudinal data; holding a holistic view of physical, mental, social, and sexual health; and access to quality health care, medications, and assistive equipment. Each group also contributed unique ideas such as importance of trust for disclosure of private information, stereotypes and discrimination, and social influences on health. Stakeholders identified specific health conditions to monitor, including COVID-19. Findings have implications for establishing a health surveillance data system and for practice more generally. Health needs to be considered holistically, including physical, mental, social, and sexual health. A data framework needs to extend beyond a cross-sectional comparative framework to include longitudinal tracking and monitoring conditions unique to persons with IDD. People with IDD may not trust nor disclose sensitive information about their disability and health to support persons and surveyors, which has implications for under-reporting of prevalence of IDD and validity of proxy-reporting. Input from multiple stakeholders is fundamental to developing a usable and relevant data collection system.