Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities: Distinctions and challenges

Purpose

The purpose of this article is to provide the reader with insight and enhanced understanding of the health care transition planning process for adolescents and emerging adults with intellectual disabilities and developmental disabilities. There are distinctly different programmatic considerations that need to be addressed in advancing their transfer of care to adult providers and promoting their transition to adulthood. These differences are due in part to the federal and state legislative initiatives that were established in the education, rehabilitation, employment, and developmental disabilities service systems. In contrast, no comparable federal and state mandates exist in the system of health care. The legislative mandates in education, rehabilitation, and employment are presented and discussed as well as the federal legislation on rights and protections for individuals with intellectual disabilities and developmental disabilities. Consequently, health care transition (HCT) planning involves application of a framework of care that is characteristically different than the planning efforts undertaken for adolescents and emerging adults (AEA) with special health care needs (SHCN)/disabilities and for typically developing AEA. The best practice HCT recommendations are discussed in the context of this intellectual disabilities and developmental disabilities framework of care.

Conclusions

Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities involves additional and distinctly clinical and programmatic models of care.

Practice Implications

Health care transition planning guidance for adolescents and emerging adults with intellectual disabilities and developmental disabilities are provided based upon best practice recommendations.     

Current perspective regarding adults with intellectual and developmental disabilities accessing computer technology

Purpose: This article was written to summarize current efforts in the research community in regards to assisting adults with severe developmental and intellectual disabilities to access a computer. Method: A literature search was conducted to determine contemporary research that has been conducted to enable computer use in persons with significant developmental disabilities utilizing databases such as ERIC or PubMed. Results: Although various assistive technology devices and interventions have been developed for persons with all types of disabilities, a lack of research into methods to help persons with severe developmental disabilities access a computer is evident. This perpetuates the underutilization of computers in this population such as those attending day programs or residing in residential facilities. Conclusions: Persons with developmental disabilities, particularly adults, are often overlooked and are not thought to be capable of using a personal computer. Though communities have endeavored to further enhance participation by persons with disabilities in many aspects of mainstream society, there is a scarcity of research pertaining to how adults with intellectual disabilities can access a computer, especially those with severe impairments. Once formal schooling is over, there appears to be scant interest in supporting adults using computers.

Implications for Rehabilitation

• Helping a person to access a computer use should be considered to be within the purview of rehabilitation professionals, even when an individual has an intellectual disability.

• Research into methods to enable access to computer technology should incorporate persons with severe intellectual disabilities, including adults.

• Assistive technology devices, including those associated with computer technology should be developed with persons with severe developmental disabilities in mind to facilitate access.

• Rehabilitation professionals such as speech therapists, occupational therapists and physical therapists should work in concert to develop guidelines and protocols founded on research to aid persons with severe and multiple disabilities who want to access a computer.

     

Obesity in people with intellectual disabilities: the impact of nurse-led health screenings and health promotion activities

BACKGROUND: Obesity appears to be more common among people with intellectual disabilities, with few studies focusing on achieving weight reduction. AIM: Firstly, to follow-up people identified as overweight and obese following special health screening clinics and to determine the actions taken. Secondly, to evaluate the impact of health promotion classes on participants' weight loss. METHODS: A clinic led by two learning disability nurses was held for all people aged 10 years and over (n = 464) who attended special services within the area of one Health and Social Services Trust in Northern Ireland. In a second study, the nurses organized health promotion classes for 20 people over a 6- or 8-week period. FINDINGS: The health screen identified 64% of adults and 26% of 10-19-year olds as being overweight or obese. Moreover, those aged 40-49 years who were obese had significantly higher levels of blood pressure. However, information obtained from a follow-up questionnaire sent after 3 months suggested that of the 122 people identified for weight reduction, action had been taken for only 34% of them and only three were reported to have lost weight. The health promotion classes, however, led to a significant reduction in weight and body mass index scores. CONCLUSIONS: Health screening per se has limited impact on reducing obesity levels in this client group. Rather, health personnel such as general practitioners, nurses and health promotion staff need to work in partnership with service staff, carers and people with intellectual disabilities to create more active lifestyles.     

Beyond the disability: recognizing mental health issues among persons with intellectual and developmental disabilities

Current societal changes mean increased possibilities for individuals with I/DD to participate in work, family, and community life. However, as individuals with I/DD have at least the same prevalence of mental health disorders as the general population and possibly an increased susceptibility to some mental health disorders, their ability to participate in work, housing, and social opportunities is hampered. It is important to improve nursing education about the specific issues of mental health care of individuals with I/DD. An important area for nursing research and education are improved clinical and practice guidelines. Research on medications and other therapies in mental health care of individuals with I/DD is limited and has methodological limitations. Nursing education and training are holistic, and nursing has the potential of positive impact on practice, education, and research that will improve the mental health care of individuals with I/DD.     

Cultural considerations for children with intellectual and developmental disabilities

The United States has been and continues to be a multicultural society. Many children are born into two cultures, sharing a different one with each parent. Children with intellectual and developmental disabilities (I/DD) may belong to a minority culture, the additional culture of disability, and the culture of poverty. After an introduction to culture and its characteristics, the focus of this article is on strategies pediatric nurses can use to assess and intervene with minority children with I/DD and their families in a culturally sensitive manner. Suggestions for future research are provided.     

Osteoporosis in adults with intellectual disabilities

The medical care of adults with intellectual disabilities (ID) originates in primary care physicians' offices. With the move toward the deinstitutionalization of these individuals in the 1970s and 1980s and the increasing longevity of this population, more adults with disabilities are living in the community. Primary care providers need to be comfortable with treating the conditions of these individuals with special needs. Individuals with ID are at higher than average risk for many chronic conditions. One condition that is often overlooked or underdiagnosed is osteoporosis. Much research regarding osteoporosis has been conducted in postmenopausal women and other high-risk groups; however, gaps remain in our understanding of the evaluation and treatment of osteoporosis in adults with ID.     

Minimizing health risks among older adults with intellectual and/or developmental disabilities: clinical considerations to promote quality of life

The number of individuals aging with lifelong intellectual and/or developmental disabilities (I/DD) is increasing and is expected to double by 2030. People with I/DD have faced a number of health disparities, including health care professionals unprepared to meet their health needs. This article will review age- and health-related clinical considerations among individuals aging with I/DD. The aim is to provide nurses with suggested interventions that promote health, prevent secondary conditions, and foster person-centered care among individuals aging with I/DD to help them live healthy and meaningful lives in their later years.