An Ecological Approach to Understanding the Complexities of School-To-Work Transitions Among Youth with Intellectual Disabilities

The goal of this communication is to provide clinicians and behavioral scientists with a scoping perspective on the diverse array of impacts of the COVID-19 pandemic on individuals with intellectual and developmental disabilities (IDD) in the U.S. It is our hope that this will stimulate subsequent scientific and advocacy efforts to ameliorate the disproportionate burden of the pandemic on people with IDD.We begin with the assertion that among non-infected persons in the U.S. few are more adversely affected by COVID-19 than individuals with IDD, given that a vast proportion require in-person care or critical therapeutic support within their living environments, with little back-up or systematic coverage for prolonged interruption of services.Many have temporarily lost access to trained caregivers or community service providers, and now face evolving threats to the return of baseline service, given uncertainties in State and agency budgets.Therefore, a first priority relates to restoration of in-person support services or comparable alternatives.There have been emerging guidelines on the safe care and support of individuals with IDD during the COVID pandemic-see Supplementary Table (ST) 1 which lists resources and documentation of early success of such strategies, however guidance is still evolving, has not permeated all reaches of the community where the information is desperately needed, and is not always presented in ways that can be fully comprehended by those with IDD.It must be

The costs of providing services and supports for people with intellectual and developmental disabilities are significant, whether living with family, their own homes, or other alternative living arrangements. Others (Heller, Caldwell, & Factor, 2007) have presented information on the general social trends and changes in service patterns. In this article, we focus on the financial aspects of caregiving; we hope that the information will be used by advocates to educate policymakers and journalists. The need for publicly funded services and supports for people with intellectual and developmental disabilities and their families is explained. The financial costs—compared with generally understood major life costs—are significant and beyond the means of most families.Most individuals with a disability live at home and are provided supports by their families. Some require supports their entire lives. Less than 20% of the U.S. population with intellectual and developmental disabilities lives in out-of-home placement (Stancliffe & Lakin, 2004). Public funding for family care is on the rise. In 1994, approximately 23.8% of the total recipients of Medicaid Home and Community Based Waiver Services, the primary public financing vehicle for supports and services for people with intellectual disabilities, lived with family members. By 2005, that number had increased to more than 45% (Lakin et al., 2006).Families expect to expend resources on their children, whether their child does or does not have a disability. The U.S. Department of Agriculture (Leno, 2006) calculated that raising a child without disabilities from birth to Age 17 averages at least $190,000 in 2005 dollars, with expenses broken down as follows: housing, food, transportation, clothing, health-related expenses, childcare–education, and miscellaneous.The basic expense categories are the same for an individual with a disability versus one without. The amount of money required for some expense categories tends to be more for some individuals with a disability compared with an individual without a disability (Stancliffe & Lakin, 2004).Additional expense categories for persons with disabilities include respite care, specialized or adaptive equipment, environmental modifications, and therapeutic services. Opportunity costs such as foregone earnings can also be disproportionate to families with a child with a disability (because of caregiving duties) and may impact family finances. Baldwin (1985) estimated overall daily living expenses for families with a child with a disability to be 8% to 20% greater than their counterparts without a disability. Hewitt, Larson, and Lakin (2000) estimated that the average out-of-pocket family costs for special services and health care for an individual with disabilities add an additional $16,058 to the average home care costs per year, not accounting for opportunity costs such as foregone earnings. Fujiura, Roccoforte, and Braddock (1994) estimated that out-of-pocket spending by families caring for an adult family member with intellectual or a related developmental disability adds at least $6,300 in additional expenditures a year. Regardless of which amount is used, the annual costs significantly impact family budgets.When do the costs of in-home family care become unaffordable, beyond the financial resources available to a family? We provide a framework for understanding this question, using three different measures of affordability: (a) the researchers' index, (b) the housing affordability index, and (c) typical expenses for most families compared with the cost of caring for a family member with a disability.Health care researchers (Hong & Kim, 2000; Stum et al., 1998) have developed a ratio determining whether out-of-pocket expenditures will be considered financially catastrophic for a family: a direct ratio of out-of-pocket expenditures to a family's gross income. Expenditures for medical care become financially catastrophic when they endanger the family's ability to maintain its customary standard of living. We are not equating disability with illness, but we maintain the financial principles are the same. For this index, researchers typically choose some level between 10% and 20 % as the catastrophic threshold, or a ratio of .10 to .20 to gross income (Stum et al., 1998).The HAI, from the National Association of Realtors (http://www.realtor.org), assesses whether homes are affordable (Baker, 2002). This index is the ratio of median household income to the required income to qualify (known as qualifying income) for a loan on a median-priced, existing single family home. When this ratio—mortgage payment to family income—is low, the affordability index is high, meaning housing is relatively affordable. An index value of 100 is used as the reference value, meaning that a typical home buyer would be able to afford a median priced home. A lower value indicates the family does not have the income for a median-priced home.We propose an affordability index for families providing support to a member with a disability, created on the basis of the HAI. It demonstrates whether the cost of caregiving is affordable for the average family. Assume monthly out-of-pocket spending for the care of a family member with a disability at $525 (Fujiura et al., 1994), with the mean U.S. household income at $39,155 (U.S. Census, 2005). To calculate the qualifying income, the current researcher's index of .10 is used (Stum et al., 1998). Therefore, for $525 monthly expenditures, use $525 × 10 (10% of maximum) × 12 months/year = $63,000 (qualifying income). To calculate the disability affordability index (DAI), divide the household income ($39,155) by the qualifying income ($63,000), and multiply by 100 which equals 62 for this example. This value would indicate that, for this example, the average family has only 62% of the income required to care for a family member with a disability. If 10% is used as the level of out-of-pocket expenses to determine the catastrophic threshold for a family, caregiving is not affordable for the average family with a member with a disability. Based on this result, one could make the assumption that this in turn would affect the ability of the family to pay for other typical expenses such as housing, other children, retirement, and college.Cost comparisons can also be used to determine the magnitude of caregiving. Cost comparisons assess caretaking affordability by comparing costs associated with taking care of an individual with a disability with the median yearly costs of typical expenses for an individual without a disability. Leno (2006) estimated that the annual cost of raising a typical child is approximately $10,600. Fujiura et al. (1994) estimated the extra nonreimbursed spending to be $6,300 per year to care for a family member with an intellectual disability or a related developmental disability. Considering the costs of a child from birth to 17 years, this is a total additional family expense of $107,100, over 60% more per year than the cost of a typical child just for the first 17 years. Individuals with a developmental disability may need care for 60 years or more, as the life span of people with developmental disabilities increases with better health care (Heller, Caldwell, & Factor, 2007).Comparison with expenses generally understood by a majority of Americans helps put this in perspective. American society attaches importance to the affordability of a college education (Hill, 2008). The median cost for 4 years at Ohio State University (home state of one of the authors) at 2008 prices, including tuition, room, and board, will cost a family approximately $68,000 (for in-state tuition; The Ohio State University, 2008), or only 7% of the cost of caring for a child with a disability from birth to Age 60.In the same state, Ohio, the median yearly homeowner costs are approximately $11,556. The median gross yearly house rental is estimated to be almost $6,100. Over a 17-year period, this cost would equal $103,700, slightly less than the cost of raising a child with a disability to Age 17. Housing costs accounted for 72% of U.S. families' debt in 1998 (Barnes & Young, 2003). A rule of thumb, increasingly being questioned (Hill, 2008), is that housing costs should not exceed 30%–35% of gross income (Greninger, Hampton, Kitt, & Achacoso, 1996). Both of these costs, for education and housing, can be less costly than the additional family expense of caregiving. Yet the typical family usually spends years planning, budgeting, saving, and sometimes borrowing for the costs of higher education and housing. The cost for education may be for 4 years, and the cost of housing may be for 15 or 30 years. Again, individuals with disabilities are living longer than ever before; therefore, caring for someone with a disability will sometimes affect a family's finances for 60 or more years.As parents age and are less able to care for their child with a disability, individuals will need community support, both paid and unpaid. There are wide variations among states and their willingness to provide the needed supports. For example, in 2004, the Maryland Developmental Disabilities Administration funded 22,000 persons with developmental disabilities in a comprehensive array of home and community-based supports. This same state has a waiting list of nearly 11,000 for similar services (The Arc of Maryland, 2007).Although research pertaining to the fiscal impacts of caring for a family member with a disability is complicated, it is clear that having a family member with a disability has an adverse effect on a family's finances. Parents' concerns to do the best for their children will usually override financial considerations, which places parents in a particularly vulnerable situation during a child's illness (Callery, 1997) or lifelong disability.The collection and development of information related to the affordability of caregiving have shown clearly that there is a need to improve public policy to adequately address the financial costs of family caregiving. As a nation, we lack a coherent family policy (Bogenschneider, 2000). For families raising a child with an intellectual or developmental disability, the interaction between the family and both federal and state public policy is crucial. The level of available public support, varying widely by state, is an important factor contributing to the burden of family caregiving. Based on the recent literature and the findings presented here, a widespread nationwide implementation of family support programs is needed (Feinberg, Wolkowitz, & Goldstein, 2006). Direct, indirect, and hidden costs of family caregiving have to be considered when public policies are developed. Left unchecked, the cost of caregiving will force more and more American families into significant debt.

There is a lack of research exploring the use of mindfulness groups for people with intellectual and developmental disabilities in a community setting. This paper explores the experiences of people with intellectual disabilities and carers who participated in Introduction to Mindfulness workshops. The mindfulness workshops consisted of an introduction to mindfulness and a body scan meditation. Participants were given a leaflet about mindfulness and an audio CD of mindfulness exercises. A questionnaire survey was conducted of people who attended the mindfulness workshops and qualitative interviews were carried out with six people with intellectual disabilities (three of whom were supported by paid or family carers). Feedback on the workshops was generally positive. Workshop participants valued the opportunity to talk to other people about their experiences and found the workshops, and in particular the body scan, very relaxing. Three of the people with intellectual disabilities who were interviewed had listened to the audio recording since the workshops and two of these had found it useful in aiding them to cope with phobias, stress and discrimination. Participants wanted further mindfulness sessions and felt that other people with intellectual disabilities could benefit from mindfulness training. The interviews revealed that people with intellectual disabilities may have very stressful lives. Mindfulness could be a useful way of helping people to manage such stress. The mindfulness workshops were clearly acceptable to people with intellectual disabilities, and further work is needed to develop and evaluate a group mindfulness program that is accessible to people with intellectual disabilities.

Entirely revised and updated, this edition of a very well-received and successful book provides the essentials for all those involved in the fields of intellectual, developmental and learning disabilities and mental retardation, drawing both on clinical experience and the latest research findings. An international, multidisciplinary team of experts cover the available literature in full and bring together the most relevant and useful information on mental health and behavioural problems of people with intellectual, developmental and learning disabilities and mental retardation. In addition, this book highlights the principles behind clinical practice for assessment, management and services. It offers hands-on, practical advice for psychiatrists, psychologists, nurses, therapists, social workers, managers and service providers

Academy of Nutrition and Dietetics: Standards of Practice and Standards of Professional Performance for Registered Dietitians (Competent, Proficient, and Expert) in Intellectual and Developmental Disabilities

ABSTRACTThis research explored Polish professionals' perceptions of parents with intellectual disabilities and the former's efforts for the latter's reintegration. Semistructured interviews were conducted with two groups: professional social workers (n = 22) and professional foster parents (n = 29). The interview questionnaire comprised questions addressing the professionals' perceptions of parents with disabilities in specific areas of the support process. Data for professionals who clearly exhibited stereotypical beliefs toward intellectual disabilities were excluded. We observed that in the interviews, respondents attempted to provide a credible representation of their own perceptions of parents with intellectual disabilities in the selected areas. Notably, Polish professionals did not consider the special needs and functioning conditions of people with intellectual disabilities. Professionals' statements mainly focused on the parents' weaknesses, effectively diminishing the possibility of a realistic assessment of their strengths and family unification.

To summarize research into public policy affecting people with intellectual and developmental disabilities, published in 2009 and early 2010. There is a growing body of international policy relating to intellectual disability, usually expressed as general moral objectives. However, these may neglect the importance of protecting people with intellectual disabilities from exploitation and violence. The importance in recent years of neoliberal conceptions of the state have led to proxy purchasing of services by public agencies, which may steer people with intellectual disabilities into a limited array of services negotiated between public authorities, family carers, and people with intellectual disabilities themselves. Some of these services may treat their clients in a childlike way, and fail to promote choice. These problems arise from several organizational factors including the difficulty experienced by staff in reconciling agency commitments to empowerment with the reality of their clients' limited capacity for making informed and rational choices. Public policy affecting the lives of people with intellectual and developmental disability is an underdeveloped area of scholarship. There is a need for more critical analysis, drawing on a broader range of academic disciplines.

AimsTo provide an overview of the Royal Australian and New Zealand College of Psychiatrists’ (RANZCP) work to improve support for those with an intellectual or developmental disability.MethodsPeople with intellectual disability experience significantly higher rates of physical and mental health conditions in comparison to the general population. However, there can be multiple barriers to effective health care including, but not limited to, stigma and discrimination, the training of health professionals and a failure to consider the specific needs of people with intellectual disability in health and disability policy leading to deficits in funding to support generic services or develop specialist service models.In Australia, a Disability Royal Commission was established in 2019 in response to community concern about reports of violence against, and the neglect, abuse and exploitation of, people with disability. The RANZCP has provided information to the Royal Commission and appeared at a public hearing focused on the education and training of health professionals in relation to people with cognitive disability. In 2022, the RANZCP published new position statements on autism and intellectual disability to address the unmet needs faced by people with autism and intellectual disability and provide a foundation for future College advocacy for improving resourcing and mental health support for these groups.ResultsThe new RANZCP position statements on autism and intellectual disability make a number of systemic recommendations to address the mental health needs of autistic people and intellectual disability including:providing adequate funding to ensure appropriate policy implementationeducating and training health providers in the mental health needs of autistic people and people with intellectual disabilityincluding the voices of autistic people to support a more inclusive approach to policy development and service designcollecting data on the needs of people with intellectual disability who are living with mental health conditions to support better service planning and better health outcomes.In response to recommendations from the Disability Royal Commission, the RANZCP is also revising its training syllabus to include additional requirements for cognitive disability and has reviewed its CPD program to determine whether CPD for the provision of health care to people with intellectual disability should be enhanced.ConclusionThe RANZCP is committed to addressing the unmet mental health needs and significant challenges of people with autism and intellectual disability and advocating for improving resourcing and mental health support for these groups.

Accessible summary Family members often support people with intellectual disabilities who display challenging behaviour. Family carers should be listened to and included in important decisions. We asked family carers how professional services had helped their relative with challenging behaviour. Family carers said that the care of people with intellectual disabilities who display challenging behaviour can be improved. Family carers sometimes felt left out of decisions and said that they needed more information. Listening to parent carers' experiences can help to improve the services that are provided to people with intellectual disabilities and their families. AbstractBackgroundThere is relatively little published data that report the experiences and views of family carers of people with intellectual disabilities who display challenging behaviour who are prescribed psychotropic medication.Materials and methodsAn online structured questionnaire was created by the Challenging Behaviour Foundation, a UK charity, and family carers of people with intellectual disability. Questions concerned the management of challenging behaviour and asked family carers about their experiences and views on the use of psychotropic medication. Responses were gathered between August and October 2016. Results are summarised using descriptive and inferential statistics and descriptive analysis of free‐text comments.FindingsNinety‐nine family carers completed the survey. Family carers reported gaps in the holistic and proactive management of challenging behaviour. Whilst some felt involved in decisions around psychotropic medication prescribing, others described feeling marginalised and lacking information and influence. The decision to prescribe psychotropic medication evoked complex emotions in family carers and medication use was associated with mixed outcomes in those prescribed. Family carers identified areas of good practice and those areas where they believe improvements are needed.ConclusionsPsychotropic medication should be only one option in a multimodal approach to challenging behaviour, but this may not always be reflected in current practice. Greater effort needs to be made to ensure that services are equipped to provide optimum care and to embed shared decision‐making into routine practice.

Recent ideological shifts in service provision promote appropriate sexual expression for people with an intellectual disability (ID), although there is little evidence that such advances in ideology are matched by current service provision. Part II of the current two-part study assessed the attitudes of staff and family carers to the sexuality of people with an ID. A questionnaire survey which included case scenarios was carried out with family (n = 155) and staff carers (n = 153) of people with an ID in the west of Ireland. In general, staff carers were more inclined than family carers to openly discuss issues of sexuality with service users, and to suggest environmental, rather than service-user characteristics, as impediments to such discussions. Attitudinal differences emerged with significant differences between staff and family carers and between younger and older carers. Staff carers were more likely to support service-user engagement in intimate and non-intimate relationships whereas the majority of family carers (80%) showed a preference for low levels of intimacy in service-user relationships. When compared with the attitudes of family carers towards the sexuality of people with ID, the attitudes of staff carers more closely match those promoted by ideological developments. However, differences in attitudes between carer groups may lead to inconsistent approaches to the management of sexuality. As a consequence, we conclude that there is continued need to provide staff and family carers with opportunities for dialogue and an ongoing need for training in the area of sexuality.

Intellectual disability is a significant concern to both mothers and healthcare professionals. This is because of the support and care needed by these children. Healthcare professionals face various challenges while providing support to mothers of children with intellectual disabilities. The study focused on exploring the views of healthcare professionals regarding the healthcare of children with intellectual disabilities in the Vhembe district, Limpopo Province. A qualitative, explorative and descriptive design was used to explore the views of 15 participants who were selected purposively. In-depth individual interviews were used to collect data from the healthcare professionals who were working in paediatric wards. The data were analysed using Tesch's eight steps. Measures to ensure trustworthiness were adhered to throughout the study. This study revealed that a shortage of healthcare professionals, especially nurses, doctors, physiotherapists and occupational therapists, had a negative impact when providing healthcare for a child with intellectual disability. Moreover, a lack of experienced personnel to care for these children and a lack of training were found to be challenges faced by healthcare professionals. Increasing the number of healthcare staff and providing training to them in intellectual disability care to enhance knowledge, competency, and skills were found to be effective strategies that help provide the needed emotional, psychological, and social support for children with intellectual disabilities and their mothers. This study adds to the literature by highlighting the vital role played by nurses, doctors, physiotherapists and occupational therapists in supporting children with intellectual disabilities and their mothers.

This research aims to present proposals that can improve the transition to adulthood of young people with intellectual disabilities (ID). Four focus groups were set up in three different cities in Spain, each comprising education and social work professionals, people with ID and family members. In total, 32 participants were included in the study. The discussions were recorded, transcribed and analysed using thematic content analysis. Improvements proposed by participants were organised into six themes: coordination between services and professionals; curricular approaches; participation by young people with ID; peer-relationship networks; family and administration. Participants highlighted the need to make the curriculum more flexible and foster curricular experiences related to social and workplace inclusion, as well as establish more continuity in guidance processes throughout the different stages of education and especially at the end of secondary education. Participants also suggested the need for young people with ID to have a more prominent role in their educational process, and strengthening their social networks by promoting their participation in community activities.

Social inclusion of children with intellectual disabilities in Accra, Ghana: Views of parents/guardians and teachers

Children with intellectual disability (ID) are known to have a deficit in self-care, social interaction, and learning abilities. Families raising these children experience a range of difficulties that require supportive systems to meet the physical, psychological, and social safety rights of children with ID. The study explored the safety of children with ID through the experiences of their families in the rural Capricorn District of Limpopo Province, South Africa. In-depth individual interviews and focus group discussion were conducted with 26 families directly involved in raising the children with ID. An inductive thematic analysis of data on the experiences of raising children with ID was undertaken with the aid of ATLAS.ti 8 computer programme. The study revealed that children with ID lack safety at home, schools, and day care centre environments due to a lack of active involvement by nuclear family members, neighbours, and communities, including interaction with their peers and professional service providers in facilities. Safety of children with ID is compromised through exploitation and injuries, leading to marginalisation as they feared further humiliation. The study highlighted that active involvement of family members, communities, and governmental and non-governmental organisations is crucial in ensuring safe environments for children with ID.

This study aimed to understand the level of participation among transition-aged youth with traumatic brain injury (TBI) in the state/federal Vocational Rehabilitation (VR) system in the context of the Workforce Innovation and Opportunity Act (WIOA). Case closures, case duration, and case expenditures in federal fiscal years (FYs) 2014, 2015, and 2016 were examined among transition-aged youth (i.e., state VR clients under the age of 22 years at application) with TBI, autism spectrum disorder (ASD), and intellectual disability (ID), using a nonexperimental and descriptive design. A disproportionate number of transition-aged youth with ASD and ID had closed state VR cases compared with transition-aged youth with TBI. Alternatively, there were greater state VR case duration levels and case service expenditures for persons with TBI compared with those with ASD or ID. The disproportionate participation with state VR was consistent among these three groups via eligibility for services under the Individuals with Disabilities Education Act. This article highlights areas of attention concerning transition-aged youth with TBI and will hopefully stimulate future dialogue, research, and policy development concerning participation with State VR for this population.