Dementia and Intellectual Disability Management System: A Conceptual Study

Editorial: Introduction to Special Section on Evidence-Based Practices for Persons With Intellectual and Developmental Disabilities

Disability, Hospital Care, and Cost: Utilization of Emergency and Inpatient Care by a Cohort of Children with Intellectual and Developmental Disabilities

There is both an intuitive and theoretical link between self-determination and quality of life for people with intellectual and developmental disabilities. Theoretically, definitions of self-determination have framed the construct with regard to its contribution to a person’s overall quality of life, while theoretical frameworks of quality of life have included self-determination among the core dimensions contributing to enhanced quality of life. These theoretical linkages have been supported by research on the quality of life and self-determination of people with intellectual and developmental disabilities and the relationships between these constructs. This article provides an overview of theoretical frameworks of self-determination, their relationship with theoretical frameworks of quality of life, and research pertaining to these constructs with people with intellectual and developmental disabilities. It is concluded that self-determination and quality of life are important constructs in designing supports that enable people with intellectual and developmental disabilities and that an important means to enhance the quality of life of people with intellectual and developmental disabilities is to promote and enable people to be self-determined.

As a physical therapy practitioner who primarily works with persons who have developmental disabilities, I have become increasingly dismayed at the Medicaid cutbacks in Tennessee, the state in which I practice. I am confident that this is also the case in many other states that face budget shortfalls due to the current economic downturn. However, in Tennessee, this has been ongoing for more than just the past year or so. Medicaid has been on the chopping block for approximately the past 6 years. A position statement adopted by the Arc and the American Association on Intellectual and Developmental Disabilities (AAIDD) maintains that ‘‘Medicaid reform should address wait lists, the quality of service, providers and staff, and increased availability of quality health care services for individuals with intellectual and/or developmental disabilities’’ (AAIDD/The Arc of the United States, 2008). It is extremely disheartening to read this proclamation and realize that just the opposite is occurring. Although everyone with a developmental disability does not have Medicaid, the majority of the individuals I see in Tennessee with developmental disabilities have Medicaid as their primary insurance, and for others it may be a secondary source of payment. The Medicaid program in Tennessee has been given the designation of TennCare and is billed as Tennessee’s expanded Medicaid program. There is also a special statewide Medicaid Waiver program to assist some individuals over age 21 years with an intellectual disability who are deemed eligible, in addition to the TennCare Medicaid program. The TennCare plan is administered by several insurance entities, such as Blue Cross Blue Shield of Tennessee (BlueCare) and United Healthcare (Americhoice TennCare). TennCare currently covers 1.2 million residents in Tennessee and uses a managed care model (TennCare Overview, n.d.). According to professionals at the state TennCare Budget Presentation at the 106th General Assembly Legislative Budget Hearings (2010), states around the country are facing a $180 billion shortfall for Medicaid spending this year, and many are cutting back on services. It is apparent to me that TennCare was already underfunded prior to the nascent recession. Clients I have served over the past 5 years who rely on TennCare or Medicaid Waiver to reimburse for services such as therapy or nursing have continually faced threats that his or her services would be cut or eliminated entirely. In addition, these individuals and their families or caregivers have had problems finding physicians who accept TennCare; locating specialists to treat them is especially problematic. Other individuals I have seen have been denied needed devices, such as wheelchairs. Still others have been dropped from TennCare altogether and are unable to afford services. If service providers who accept TennCare can be found, delays in service are not uncommon. The added emotional stress and privation placed on the person with the developmental disability and his or her family and caregivers when services are not readily available, or are denied outright, can be immense. Families and other advocates must battle TennCare to merely preserve current levels of services, much less improve on what has been offered up until now. I have heard stories of families who are told by TennCare representatives that their son or daughter no longer qualifies for services such as in-home skilled nursing care. When the family member responds that they work during the day and cannot care for their loved one, the TennCare representative would counter that another family member could care for the individual. How can another family member be expected to be available 40 or more hours per week to care for an individual who has severe disabilities? Furthermore, many of the children and adults I see are cared for by a single parent. I am aware of several persons with INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 1: 50–52 | FEBRUARY 2011

Intellectual disability is a general term that describes intellectual capacity and adaptive functioning. There are many causes and many co-occurring conditions. To appreciate and respect the uniqueness of each individual and to choose appropriate interventions, it is critical that, if possible, the cause for intellectual disability be identified or the conditions that led to or sustain it be recognized. This chapter begins with an overview followed by an approach to understanding causation, a description of how etiology is determined, consideration of the neurobiological/environmental interface, a discussion of the evaluation process to determine causes and conditions related to diagnoses, and a discussion of risk factors. Intellectual disability is an intellectual, cognitive, and developmental disability that profoundly affects an individual’s functioning and adaptation to everyday life. Intellect refers to mental ability or capacity, the power of thought, and the ability to reason and solve problems. Mental capacity is distinguished from perception, emotions, and feelings. Intelligence refers to facility and quickness in understanding and problem solving. In intellectual disability, there is reduced mental capacity. Cognition refers to the use or handling of knowledge through mental activities associated with thinking, learning, and memory, which are necessary processes to acquire knowledge. In intellectual disability, there are cognitive disabilities that vary depending on the individual syndrome. The extent of intellectual disability varies among syndromes, and there may be variations within a syndrome. Both cognition and intellect are linked to cortical brain function. Intellectual disability is a developmental disability with onset during the developmental period. Thus, there are delays in meeting developmental mile stones in motor, fine motor, language, and psychosocial areas. Finally, there are difficulties in adaptive function and in the mastery of developmental tasks as a result of intellectual, cognitive, and developmental disabilities. A focus on the etiology of intellectual disability is needed for research, clinical, and administrative purposes. This chapter will review the multiple causes of intellectual disability, considering the interface between genetic, neurobiologic, and environmental factors and causation. It emphasizes the importance of a comprehensive evaluation and provides guidelines for conducting an evaluation. Associated mental, emotional, and behavioral disorders are discussed in chapter 6.

Amicus Brief of Disability Services Experts in Markelle Seth v. District of Columbia, et al.

PART I: FOUNDATIONS.- Epidemiology and Etiology of Mental Retardation.- The Autism Spectrum.- Cerebral palsy.- Epilepsy in People with Mental Retardation.- Pediatric Brain Injury.- Behavioral Effects of Genetic Mental Retardation Disorders.- Social Acceptance and Attitude Change: Fifty Years of Research.- PART II: DISABILITY SERVICES.- Evaluating Developmental Disabilities Services.- Educational Service Interventions and Reforms.- Psychological Services for Older Adults with Intellectual Disabilities.- Residential and Day Services.- Behavioral-Clinical Consultation in the Developmental Disabilities: Contemporary and Emerging Roles.- Advocacy and Litigation in Professional Practice.- PART III: ASSESSMENT AND DIAGNOSIS.- Intellectual Assessment and Intellectual Disability.- Adaptive Behavior.- Psychosocial and Mental Status Assessment.- Functional Behavioral Assessment in Practice: Concepts and Applications.- Psychoeducational Assessment.- Developmental and Behavioral Screening.- Forensic and Psychosexual Assessment.- Family Assessment and Social Support.- PART IV: PREVENTION AND TREATMENT.- Science to Practice in Intellectual Disability: The Role of Empirically Supported Treatments.- Early Intervention: Background, Research Findings, and Future Directions.- The System of Early Intervention for Children with Developmental Disabilities: Current Status and Challenges for the Future.- Stereotypy, Self-injury, and Related Abnormal Repetitive Behaviors.- Psychopathology Among People with Developmental Delays - Assessment and Treatment.- Aggression in Persons with Intellectual Disabilities and Mental Disorders.- Speech and Language Deficits in Children with Developmental Disabilities.- Functional Skills Training for People with Intellectual and Developmental Disabilities.- Social Skills Training for Children with Intellectual Disabilities.- Vocational Skills and Performance.- Sex Offending Behavior.- Pharmacotherapy.- PART V: ETHICAL ISSUES.- Ethical Issues in Clinical Services and Research.- Ethics and Values in Behavioral Perspective.

Risk for osteopenia and osteoporosis in institution-dwelling individuals with intellectual and/or developmental disabilities.

Accessible Summary We asked parents of children with intellectual and developmental disabilities to complete a survey to help us understand more about the foot problems their children have experienced. Parents told us that foot problems were common in their children, 75% of the parents raised this as a concern. Less than half of the parents felt confident with managing these problems. Buying shoes was considered difficult. The results from this survey tell us that foot problems in children and young people with intellectual and developmental disabilities are a concern. It is important to ensure that children have access to foot care services. AbstractBackgroundFoot problems have been reported to be a very common health issue in adults with intellectual disabilities; foot problems in children and young people are, however, poorly understood. The aim of this study was to explore foot care needs of children and young people with intellectual and developmental disability.MethodsAn exploratory, cross‐sectional online survey was undertaken across a four‐month period. A purposive snowball sampling approach was adopted. The survey tool was piloted before launch and comprised three sections. The first section elicited information relating to parent/caregiver status, diagnosis, secondary diagnoses and age of child/young person. The second domain explored foot care and sought to obtain information about foot problems, access to health services and existing knowledge about foot health. The third domain focussed on footwear. Ethical approval was granted from the host institution, and all participants provided electronic consent before completing the survey.ResultsData were collected from 49 parents/parental caregivers reporting on behalf of their children (mean age 7 years of age; SD 4.5 years of age). Parents reported foot problems to be very common (75%), and pes planus was the most frequent concern (51%). Twenty‐four parents reported difficulties with finding shoes (48%). A mismatch between foot shape and the shoe (30%) or complications with orthotic devices (14%) within the shoe were highlighted.ConclusionThe results demonstrated that the burden of foot problems in children and young people with intellectual and developmental disabilities is considerable. The findings highlight the importance of access to foot care services for these children.

The current study examined how employment conditions (competitive employment, work center employment, unemployment) are associated with the quality of life (QoL) for individuals with intellectual or developmental disabilities. Using the Comprehensive Quality of Life Scale – Intellectual/Cognitive Disability (5th Edition; ComQoL-I5; Cummins, 1997a) to measure objective QoL factors, and the PWI-ID (Personal Wellbeing Index – Intellectual Disability, 3rd Edition; Cummins and Lau, 2005b) to measure subjective well-being, participants answered self-reporting questions regarding the seven QoL domains. Kruskal-Wallis H for Oneway Analysis of Variance were used to determine statistical significance between comparison work conditions. Results indicate significant findings in the objective QoL domains of Material Well-Being, Productivity, and Safety between the work conditions for individuals with intellectual and developmental disabilities, with participants in the competitive-employment group reporting the highest QoL objective scores in these areas. Implications of these findings for practice and research are discussed.

Severe Maternal Morbidity and Maternal Mortality in Women With Intellectual and Developmental Disabilities

The hospitalization of individuals with intellectual and developmental disabilities provides unique challenges. Length of stay (LOS) for this population is often longer than that of other individuals and than that of individuals with other disabilities (Walsh, Kastner, & Criscione, 1997). Patients with intellectual and developmental disabilities report feelings of vulnerability, loss of control, fear of what was going to happen to them (Parkes, Samuels, Hassiotis, Lynggaard, & Hall, 2007), and difficulty communicating their needs to hospital staff (Iacono & Davis, 2003). It is difficult to find hospitalization satisfaction results for individuals with intellectual and developmental disabilities, but limited research has indicated that, at best, individuals with intellectual and developmental disabilities report feeling neutral about their hospital stay (Hulzebos et al., 2006; Iacono & Davis, 2003). Rush University Medical Center (RUMC; Chicago, IL) has long-standing efforts to improve access to care for individuals with disabilities, including incorporating principles of universal design into new buildings and retrofitting of old buildings, training of personnel in disability awareness, and partnering with the community. The Rehabilitation Institute of Chicago awarded RUMC and Rush University College of Nursing the 2004 Henry Betts, MD Award, a top corporate award for disability rights and employment advocacy. RUMC also was cited by the Robert Wood Johnson Foundation (Princeton, NJ) as setting a standard of excellence in the crisis of health care for people with disabilities (Rush University Medical Center, 2009). Furthering these efforts, the Adults With Intellectual and Developmental Disabilities Committee (AIDDC) was formed at RUMC in 2007 following a town hall meeting where staff raised concerns about their training to serve patients with intellectual and developmental disabilities. The AIDDC is multidisciplinary, with representatives from nursing (neurology, psychiatry, community, systems and mental health), child life services, social services, employee and organizational development, patient satisfaction, medicine, volunteer services, and outpatient services. The AIDDC established a mission ‘‘to foster awareness, sensitivity, and skills related to individuals with intellectual and developmental disabilities in order to promote partnership in the healthcare experience.’’ Initial efforts of the AIDCC included a survey conducted among RUMC employees who had direct contact with patients, including departments such as medicine, nursing, therapy services, social services, dietary services, transport services, registration and housekeeping (N 5 292). Of those who responded, 12% indicated that they had frequent contact (daily or almost daily), another 18% indicated that they had regular contact (at least once per week), and 70% indicated occasional contact (once a month or less) with adult clients with intellectual and developmental disabilities. Areas of concern were communicating with clients to avoid clients becoming upset and for calming clients, explaining hospital procedures, assessing pain levels, and preparing clients for discharge. Additional consultation with staff identified specific hospital procedures for which they felt a need for improved communication, including electroencephalograms (EEGs), computed-tomography (CT) scans, and phlebotomies. Consultation with interested consumers identified a need for improved communication with staff regarding the specific care needs of adult clients with intellectual and developmental disabilities. Based on the surveys and consumer input, the AIDDC developed a series of client-specific material for improving communication. Procedure-specific information booklets and sequence boards using photos, simple language, and tactile examples were developed for EEGs, CT scans, INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 48, NUMBER 2: 145–147 | APRIL 2010

BackgroundNearly three-quarters of the estimated 4.9 million people with intellectual and developmental disabilities (IDDs) in the United States live with family caregivers, 25% of whom are aged older than 60 years. People with IDDs experience disproportionately high rates of mortality, morbidity, and acute care use, often due to a lack of accessible, tailored resources to support them throughout the lifespan. Few caregivers engage in long-term care (LTC) planning, often due to a lack of information and support.ObjectiveThis protocol describes the design and methods of the Future Planning and Well-Being for Individuals with Intellectual Disabilities and Family Caregivers study, a randomized controlled trial evaluating the effectiveness of the Map Our Life web-based LTC planning tool compared to an attention control website on caregiver-reported burden, caregiver-reported well-being, and progress in and communication of future plans for the individual with an IDD.MethodsThe Future Planning and Well-Being for Individuals with Intellectual Disabilities and Family Caregivers study is a national, multisite, randomized controlled clinical trial with a target enrollment of 1050 family caregivers of individuals with IDDs at 6 sites across the United States. Participants are randomly assigned (1:1) to either the Map Our Life web-based LTC planning tool plus enhanced usual care or an attention control group consisting of a Centers for Disease Control and Prevention–sponsored health promotion website for people with disabilities plus enhanced usual care. Primary outcomes, including caregiver-reported burden, caregiver-reported well-being, and LTC planning behaviors, are assessed at baseline and at 1, 6, and 18 months. Data will be analyzed using mixed-effects models to accommodate the repeated measures design.ResultsThis study was funded in July 2022, received initial Institutional Review Board approval in August 2023, and was registered on ClinicalTrials.gov in December 2023. Recruitment began in December 2023 and is scheduled to conclude in December 2025. Primary outcome analyses will commence immediately following the completion of final follow-up surveys.ConclusionsLTC planning is an important component of addressing health disparities among individuals with disabilities and their family caregivers. By focusing on using an innovative and accessible tool for LTC planning, the study addresses a critical gap in available resources with the potential to improve quality of life and reduce caregiver burden.Trial RegistrationClinicalTrials.gov NCT06065527; https://clinicaltrials.gov/study/NCT06065527International Registered Report Identifier (IRRID)DERR1-10.2196/77184

Severe Outcomes, Readmission, and Length of Stay Among COVID-19 Patients with Intellectual and Developmental Disabilities

Interactive digital art can be a beneficial therapeutic intervention for a variety of populations, but specifically for the population of intellectual and developmental disabilities. Interactive digital art uses the engagement of the participant to create a digital form of art. The purpose of this literature review is to explore the effects that interactive art has on individuals with intellectual and developmental disabilities. Interactive arts discussed were used in a variety of settings ranging from sand art, to using video games, or interactive art exhibits. Sand art and other digital painting methods were proven to be beneficial in improving cognitive functioning and social aspects of those with intellectual disabilities. While exploring the various settings, participant feedback was given in association with using interactive digital art.