Co-production of research derived actionable resources for the delivery of Individual Service Funds (EQUALD study): Protocol.

Adults with a learning disability who receive social care are legally entitled to a personal budget. Personal budgets were introduced to promote choice and control in support. Individual Service Funds were introduced as a flexible way that personal budgets can be managed by a provider while maintaining choice and control for the individual. Individual Service Funds have been shown to improve quality of life for individuals and efficiency in support. Despite this, only 20% of local authorities offer them to adults with a learning disability, demonstrating the need for resources to be developed to support their delivery. This protocol described a co-production study with key stakeholders to develop and refine Individual Service Fund resources. Our primary aim is to co-produce two actionable resources: to support development, delivery, consistency, and sustained provision of ISFs; and to support uptake and optimal use of ISFs by recipients. We also aim to user-test and evaluate these resources with three Local Authorities. The result of this study will be two resources that will support the uptake of Individual Service Funds for adults with a learning disability that will be freely available online.

Republication of The Technology-Related Assistance to Individuals with Disabilities Act: Relevance to Individuals with Learning Disabilities and Their Advocates.

Assistive technology (AT) was recognized by Congress as a viable need for people with disabilities when it passed the Tech Act in 1988. The legislation, which was reauthorized in 1994, has resulted in numerous programs and services that have helped people with disabilities access and use AT devices. The Tech Act's implications for people with learning disabilities is discussed in this article.

Economic burden of slow learners: A prevalence-based cost of illness study of its direct, indirect, and intangible costs.

Aims: The primary objective of this study was to evaluate the economic burden of slow learners (students with "borderline intellectual functioning") by estimating its direct, indirect, and intangible costs. The secondary objective was to assess the impact of variables on the economic burden. Settings and Design: Cross-sectional, single-arm descriptive study. Setting: Learning disability clinic in a public medical college in Mumbai. Materials and Methods: The study cases (age ≥5 - 18 years) were recruited by nonprobability sampling. A structured questionnaire was used to interview the parent to collect data related to direct and indirect costs. Intangible costs data were collected by documenting the willingness-to-pay value using the contingent valuation technique. Statistical Analysis Used: A quantile regression model was used to assess the impact of predictor variables on the costs. Results: The direct, indirect, and intangible costs of slow learners were INR 6,065,915, 10,298,613, and 145,172,800, respectively. Indirect costs comprised 62.9% of the total costs. Expenditure on tuitions, medications, and remedial education comprised 57.38%, 16.18%, and 10.30% of the direct costs, respectively. The average annual total costs of slow learners were INR 3,544,880. The average annual learning disability clinic costs were INR 2,250,194. The average annual total costs per student were INR 57,951. Longer duration of poor school performance was predictive of higher direct and total costs. Conclusion: The economic burden of slow learners is enormous (intangible > indirect > direct costs). Tuitions are the most costly component of direct costs. Parental loss of earnings is the most costly component of indirect costs.

The opioid epidemic, neonatal abstinence syndrome, and estimated costs for special education services.

Children whose mothers used or misused opioids during their pregnancies are at an increased risk of exhibiting cognitive or behavioral impairments in the future, which may result in identifiable disabilities that require special education services in school. The costs associated with these additional educational services, however, have remained unknown. Using data from available empirical work, we calculated a preliminary set of cost estimates of special education and related services for children diagnosed with neonatal abstinence syndrome (NAS). We estimated these costs for a single cohort of children from the Commonwealth of Pennsylvania with a diagnosis of NAS. The resulting cost estimates were $16,506,916 (2017 US$) in total educational services provisions, with $8,253,458 (2017 US$) of these costs attributable to the additional provision of special education services. This estimate includes both opioid use during pregnancy that was linked to NAS in general and NAS that resulted specifically from prescription opioid use. We estimate the total annual education costs for children born in Pennsylvania with NAS associated with maternal use of prescription opioids to be $1,012,506 (2017 US$). Of these costs, we estimate that $506,253 (2017 US$) are attributable to the additional provision of special education services. We detail the calculation of these cost estimates and provide an expanded set of estimates for additional years of special education services (3-year, 5-year, and 13-year, or the K-12 educational time frame). We conclude with a discussion of limitations and suggestions for future work.

Economic burden of specific learning disability: A prevalence-based cost of illness study of its direct, indirect, and intangible costs.

Aims: The primary objective of the present study was to evaluate the economic burden of specific learning disability (SpLD) by estimating its direct, indirect, and intangible costs. A secondary objective was to assess the impact of variables on the economic burden. Settings and Design: Cross-sectional single-arm descriptive study. Setting: Learning disability clinic in a public medical college in Mumbai. Subjects and Methods: The study cases (aged ≥8 years) were recruited by non-probability sampling. A structured questionnaire was used to interview the parent/guardian to collect data related to direct and indirect costs. Intangible costs data were collected by documenting the willingness-to-pay value using the contingent valuation technique. Statistical Analysis Used: A quantile regression model was used to assess the impact of predictor variables on the costs. Results: The direct, indirect, and intangible costs due to SpLD were Indian Rupees (INR) 5,936,053, 29,261,220, and 42,295,000, respectively. Indirect costs comprised 83.1% of the total costs. Expenditure on tuitions and remedial education comprised 61.61% and 64.39% of the indirect and direct costs, respectively. The average annual learning disability clinic costs were INR 2,169,888. The average annual total costs per student were INR 90,773. Longer duration of poor school performance was predictive of higher direct, indirect, and total costs; and higher socioeconomic status was predictive of lower intangible costs. Conclusion: SpLD is a cost-intensive disability (intangible > indirect > direct costs). Tuitions, which are not the therapy for SpLD, are the most costly component of indirect costs. Remedial education is the most costly component of direct costs.

Early Child Development and Nutrition: A Review of the Benefits and Challenges of Implementing Integrated Interventions.

Poor nutrition (substandard diet quantity and/or quality resulting in under- or overnutrition) and the lack of early learning opportunities contribute to the loss of developmental potential and life-long health and economic disparities among millions of children aged <5 y. Single-sector interventions representing either early child development (ECD) or nutrition have been linked to positive child development and/or nutritional status, and recommendations currently advocate for the development and testing of integrated interventions. We reviewed the theoretical and practical benefits and challenges of implementing integrated nutrition and ECD interventions along with the evidence for best practice and benefit-cost and concluded that the strong theoretical rationale for integration is more nuanced than the questions that the published empirical evidence have addressed. For example, further research is needed to 1) answer questions related to how integrated messaging influences caregiver characteristics such as well-being, knowledge, and behavior and how these influence early child nutrition and development outcomes; 2) understand population and nutritional contexts in which integrated interventions are beneficial; and 3) explore how varying implementation processes influence the efficacy, uptake, and cost-benefit of integrated nutrition and ECD interventions.

Cost Effectiveness of Using Array-CGH for Diagnosing Learning Disability.

OBJECTIVE: To undertake a cost-effectiveness analysis of using microarray comparative genomic hybridisation (array-CGH) as a first-line test versus as a second-line test for the diagnosis of causal chromosomal abnormalities in patients referred to a NHS clinical genetics service in the U.K. with idiopathic learning disability, developmental delay and/or congenital anomalies. METHODS: A cost-effectiveness study was conducted. The perspective is that of a U.K. NHS clinical genetics service provider (with respect to both costs and outcomes). A cohort of patients (n = 1590) referred for array-CGH testing of undiagnosed learning disability and developmental delay by a single NHS regional clinical genetics service (South East Thames Regional Genetics Service), were split into a before-and-after design where 742 patients had array-CGH as a second-line test (before group-comparator intervention) and 848 patients had array-CGH as a first-line test (after group-evaluated intervention). The mean costs were calculated from the clinical genetics testing pathway constructed for each patient including the costs of genetic testing undertaken and clinical appointments scheduled. The outcome was the number of diagnoses each intervention produced so that a mean cost-per-diagnosis could be calculated. The cost effectiveness of the two interventions was calculated as an incremental cost-effectiveness ratio to produce an incremental cost-per-diagnosis (in 2013 GBP). Sensitivity analyses were conducted by altering both costs and effects to check the validity of the outcome. RESULTS: The incremental mean cost of testing patients using the first-line testing strategy was -GBP241.56 (95% CIs -GBP256.93 to -GBP226.19) and the incremental mean gain in the percentage diagnoses was 0.39% (95% CIs -2.73 to 3.51%), which equates to an additional 1 diagnosis per 256 patients tested. This cost-effectiveness study comparing these two strategies estimates that array-CGH first-line testing dominates second-line testing because it was both less costly and as effective. The sensitivity analyses conducted (adjusting both costs and effects) supported the dominance of the first-line testing strategy (i.e. lower cost and as effective). CONCLUSIONS: The first-line testing strategy was estimated to dominate the second-line testing strategy because it was both less costly and as effective. These findings are relevant to the wider UK NHS clinical genetics service, with two key strengths of this study being the appropriateness of the comparator interventions and the direct applicability of the patient cohort within this study and the wider UK patient population.

Comparing service use and costs among adolescents with autism spectrum disorders, special needs and typical development.

Autism spectrum disorder is a complex condition that requires specialised care. Knowledge of the costs of autism spectrum disorder, especially in comparison with other conditions, may be useful to galvanise policymakers and leverage investment in education and intervention to mitigate aspects of autism spectrum disorder that negatively impact individuals with the disorder and their families. This article describes the services and associated costs for four groups of individuals: adolescents with autistic disorder, adolescents with other autism spectrum disorders, adolescents with other special educational needs and typically developing adolescents using data from a large, well-characterised cohort assessed as part of the UK Special Needs and Autism Project at the age of 12 years. Average total costs per participant over 6 months were highest in the autistic disorder group (£11,029), followed by the special educational needs group (£9268), the broader autism spectrum disorder group (£8968) and the typically developing group (£2954). Specialised day or residential schooling accounted for the vast majority of costs. In regression analysis, lower age and lower adaptive functioning were associated with higher costs in the groups with an autism spectrum disorder. Sex, ethnicity, number of International Classification of Diseases (10th revision) symptoms, autism spectrum disorder symptom scores and levels of mental health difficulties were not associated with cost.

Profile of children with poor school performance in Mumbai.

We report on the etiology of poor school performance (PSP) in children assessed at a learning disability clinic in western India over 12 months. Specific learning disabilities (dyslexia, dysgraphia and dyscalculia) were the commonest cause of PSP (72.76%), followed by borderline intellectual functioning (8.94%), language barrier (8.54%), and mental retardation (4.88%).

The impact of social policy on changes in professional practice within learning disability services: different standards for children and adults? A two-part examination: part 2. Professional services under the coalition: the trends continue apace.

This is the second of two articles examining links between policy developments and changes in professional practice within learning disability services in England. The first article focused on policy foundations over the last 30 years, and concluded that there was a developing gap in professional inputs between children's and adult services. This article, written one year into the Coalition government, argues that its policies--especially the large-scale reduction in public expenditure, but also the decline in support for inclusion of children in mainstream education, the rapid growth of academies, and proposals for the reorganization of the NHS--have exacerbated the trends identified earlier. In addition, local authorities, though outwardly compliant, have variously interpreted their responsibilities under the personalization agenda, in particular in relation to individual budgets, and this has resulted in assessments of need being based on 'service hours' rather than service quality and staff qualifications.

Keeping it in the family? People with learning disabilities and families employing their own care and support workers: findings from a scoping review of the literature.

This article focuses on people with learning disabilities and their families who employ care or support workers using public (government) and/or private (self and family) funds. Such consumer-directed support takes place in England through personal budgets and direct payments. Research and material relevant to these employment relationships were explored in a scoping review undertaken by the authors in 2010. The review identified a small number of studies that involved people with learning disabilities as respondents, although more relied on family carers as proxy respondents. The findings from these studies covered recruitment and administration, employment of family members, training needs, the nature and content of employment relationships, and ending employment. The review observed that employment relationships, practices, and dynamics are surprisingly little explored in the literature and generally unobserved. The article concludes with specific messages from the review for family carers, for people with learning disabilities and for care and support workers.

The mental wealth of nations.

Countries must learn how to capitalize on their citizens' cognitive resources if they are to prosper, both economically and socially. Early interventions will be key.

The economic consequences of autistic spectrum disorder among children in a Swedish municipality.

In this study, the societal economic consequences of autistic spectrum disorder were investigated using a sample of parents of children identified with the disorder and living in a Swedish municipality. Cost information was collected using a postal questionnaire that was developed through experiences gained from an earlier study. Using conservative assumptions, the additional societal cost due to the disorder was estimated to be approximately 50,000 annually per child. Parents of children with the disorder spent an average of about 1000 hours per year additionally caring for and supporting their child. The study indicates that the major cost drivers for autistic spectrum disorder among children can be found within the community for support and schooling, while the major impact on relatives is on time spent and thereby quality of life rather than a financial burden.

Array comparative genomic hybridization for diagnosis of developmental delay: an exploratory cost-consequences analysis.

A major application of array comparative genomic hybridization (aCGH) is to define a specific cause in children with undiagnosed learning and developmental disability (LDD). Medical notes for 46 consecutive patients selected for aCGH analysis by clinical dysmorphologists were abstracted for clinical investigations related to LDD and a cost-consequences analysis was performed. aCGH analysis was completed in 36 cases and five diagnostic chromosomal anomalies were identified (13.8%). The number of investigations undertaken on each child varied. With aCGH estimated to cost 590 British Pound per case, if aCGH had been undertaken after negative standard initial tests for LDD investigation, the additional cost would be 2399 British Pound per positive case. If the cost of aCGH was reduced to 256 British Pound per case (approximately 350 Euro), aCGH becomes cost neutral. All chromosomal anomalies detected by aCGH had a de Vries score of > or =5. If aCGH had only been used for individuals with a score of > or =5, the sensitivity increased to 21.7% yielding a cost of 1087 British Pound per positive case identified. Pre-selection of cases for aCGH based on de Vries criteria has a major economic impact on introducing aCGH into clinical practice. Prospective studies are required to explore the long-term costs and consequences of aCGH and identify when aCGH may provide the most benefit at least cost.