Health and independence of young adults with disabilities. Two years later

PURPOSE: American culture expects young people to complete school, find satisfying work, develop social networks, stay healthy, contribute to the maintenance and support of households, and participate as citizens in their communities. We know little about the life trajectories of young adults with disabilities during emerging adulthood. METHODS: Four-page surveys were mailed to the 650 respondents of a 10-page survey sent to graduates of a state Children with Special Healthcare Needs program and a children's orthopaedic hospital 2 years earlier to determine changes in healthcare access and use, insurance status, health perceptions, education, work, and markers of independent living over those 2 years of maturation. SAMPLE: The study sample was 300 young people who completed both surveys. Respondents were 20-25 years of age, 95% White, 64% female, and 28% who reported that they were independent in all activities of daily living (ADL). RESULTS AND DISCUSSION: Compared with the initial survey, results for this group of young people who reported needing assistance in ADL showed that, 2 years later, fewer were living with their parents and even more were married. More of these young adults had children, although at only about half the rate of typical young adults. General health perceptions remained stable, with twice the percentage of respondents reporting fair or poor health compared with typical young adults. Only 17% of respondents reported not having a usual source of care compared with 27% of Kentuckians ages 18-24, but they continued to use the emergency room much more than did typical young adults. Twenty-five percent of survey respondents reported having no health insurance compared with 39% of Kentuckians ages 18-24 and 29% of young adults in the United States. More had completed high school, and 32% had college experience. Two years later, 51% were working compared with 45% initially; 63% of those not working would have liked to have been working, and 53% of those were looking for work. Of great concern is the increase from 23% to 29% of young adults not in school, not working, and not home with children. In general, the study shows that young people with disabilities show progress in markers of adulthood as they move through their 20s just as much as do typical young adults. Nurses can support healthy transitions through assistance in finding adult medical homes, doing preventive screening, teaching knowledge and skills for healthcare planning and management, and planning for continuous insurance.     

The transition from child to adult health services for young adults with intellectual disabilities: An evaluation of a pilot of an online learning resource for Registered Nurses

AimThis study formed the third phase of a national study on the experience of transition from child to adult health services for young adults with intellectual disabilities. The aim of this phase was to evaluate the accessibility and acceptability of an on-line learning resource for Registered Nurses.BackgroundThe population of young adults with intellectual disabilities and complex needs is increasing. Consequently, more will move from child to adult healthcare, with evidence highlighting that for some their experiences of the transition process is poor. The main study provided contemporary evidence to raise the awareness of Registered Nurses of the needs of young adults with intellectual disabilities and their role in enabling an effective transition from child to adult services.MethodsThe online learning resource was developed and piloted with Registered Nurses involved in the transition from child to adult health services for young adults with intellectual disabilities and complex needs. Data collection involved an online survey and semi-structured interviews.ResultsTwelve Registered Nurses from 2 Scottish NHS Boards completed the questionnaire and 3 participated in a follow-up interview. The findings suggest that the mode of on-line delivery and most of the content of the learning resource were both acceptable and accessible to Registered Nurses across a range of areas of nursing practice. The learning resource was further adapted in response to the participant data.ConclusionThis on-line learning resources offers the potential for Registered Nurses, and potentially other healthcare professionals to undertake evidence-based, structured further education regarding the effective transitions for young adults with intellectual disabilities and their families.Tweetable abstractRegistered Nurses have key contributions to enable the transition from child to adult healthcare for young adults with intellectual disabilities.     

Healthcare Transition Among Young Adults With Childhood-Onset Chronic Pain: A Mixed Methods Study and Proposed Framework

Chronic pain extends from childhood to adulthood for many young people. The transition from pediatric to adult care is a critical, yet understudied, healthcare task facing young adults with chronic pain. The aims of this observational, sequential mixed methods study were to 1) document the healthcare transition status of young adults with chronic pain (Stage 1, quantitative aim), 2) examine young adults’ perspectives of barriers and facilitators of healthcare transition (Stage 2, qualitative aim), and 3) integrate findings to construct a theoretical framework of healthcare transition. A cohort was identified with childhood chronic pain and prior care in one of 15 multidisciplinary pediatric pain clinics across the United States and Canada. Approximately 6 years later, 189 young adults (M age = 21.0; age range = 18–24; 81.5% female) from this cohort with continuing chronic pain completed surveys for Stage 1, and a subsample (n = 17) completed qualitative interviews for Stage 2. Quantitative findings demonstrated that young adults may experience lapses in care, with 41.8% indicating they had not transitioned to adult pain services. Qualitative analysis revealed young adults experienced significant barriers (eg, abrupt departure from pediatric care) as well as facilitators (eg, acceptance of pain prognosis) of healthcare transition. Quantitative and qualitative findings were integrated to construct a healthcare transition framework for chronic pain, which highlights transition as a complex process involving multiple pathways, outcomes, and stakeholders. Advancements in research and practice are needed to develop transition services to bridge gaps in care and optimize health outcomes for young people with chronic pain.PerspectiveThis mixed-methods study demonstrated that 41.8% of young adults with chronic pain experience lapses in adult-centered pain care and identified key barriers and facilitators to successful healthcare transition. Findings were integrated to construct the first healthcare transition framework for youth with chronic pain.     

Indicators of choking risk in adults with learning disabilities: a questionnaire survey and interview study

Purpose. Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking. Method. A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A 'service user' may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture. Results. A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals. Conclusion. Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

Nurse's role in promoting health transitions for adolescents and young adults with developmental disabilities

This article examines the impact of cultural factors influencing the youth's transition process and includes recommendations for addressing these needs within the context of nursing practice. Youth-centered transition planning begins with a comprehensive, culturally competent assessment of adolescent and family needs in order to foster youth autonomy and family support during this important stage of development. Nurses who work with youth with developmental disabilities are faced with many questions from youth and families regarding the how, what, when, and where of transition planning, such as "Where do I find an adult health care provider who has the clinical expertise and sensitivity to my disability concerns?" and "Where can I get health insurance coverage when I "age out" of the health insurance program I am currently enrolled in?" The questions youth and families have not only reflect their needs for services and supports, but also represent the cultural context of their experiences. Who is this youth who is fast growing up, soon to become an adult? What has been this young person's experiences as a boy or a girl, a person with a developmental disability, a member of his or her family, and a member of the community? Each youth's experiences have an enormous impact shaping his or her progression through adolescence, and the impact continues with adult development. Nurses can serve as pivotal members of the team assisting these youths with developmental disabilities and their families in confronting the challenges and excitement of successfully transitioning to adulthood.     

Improving care for children with cerebral palsy

A report about the health care of people with learning disability published by a UK charity concluded that this group was discriminated against and that healthcare professionals had a poor understanding of their needs. A case report of a young person with cerebral palsy is used here to demonstrate good practice in the care of children with learning disabilities. The careful development over time of individualised solutions makes a difference to the quality of life for children and families. Improved understanding through education as well as collaborative working and family participation will help ensure that children and young people receive the range of services they require.     

Transitioning to adult health care facilities for young adults with a chronic condition

Youth with chronic conditions and special health care needs are surviving into adulthood. In certain circumstances, these youth may choose to remain with their pediatricians for their health care needs. However, most youth will require complex coordinated care in order for them to live full and productive lives to the best that they are able. Issues such as independence and dependence, educational and vocational choices, and insurance are important in transitioning to an adult-focused system of health care. This article addresses strategies that will assist young adults with the process of transitioning from pediatric care centers to adult health care centers. Despite the importance of providing a transition program, few transition programs exist for young people with chronic conditions (Sawyer, Blair, & Bowes, 1997). This article will also discuss barriers to the transition process.     

Indicators of choking risk in adults with learning disabilities: A questionnaire survey and interview study

Purpose.?Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking.

Method.?A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A ‘service user’ may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture.

Results.?A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals.

Conclusion.?Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

Residents with disabilities: a national survey of directors of emergency medicine residency programs

BACKGROUND: The Americans With Disabilities Act (ADA) has been in effect since 1990. The present study shows response to this act for emergency medicine (EM) residents nationwide. METHODS: A total of 121 surveys were mailed to the directors of American College of Graduate Medical Education (ACGME)-approved residency programs. A definition of disability was provided, and a second mailing was sent to those not replying. RESULTS: Ninety-two program directors (76%) responded, representing 4,644 residents. Of these, 62 residents (1.3%) were reported as having a documented disability. Programs with a known disabled resident were significantly more likely to have available resources for assistance. Forty-seven (52%) of the program directors suspected a resident might have an undiagnosed disability, and 40 (85%) of these recommended testing or referral. CONCLUSIONS: There is a wide array of disabilities among EM residents. Available assistance varies. This may apply to other residencies as well.     

Adapting a robotics program to enhance participation and interest in STEM among children with disabilities: a pilot study

Purpose: Youth with disabilities are under-represented in science, technology, engineering, and math (STEM) in school and in the workforce. One encouraging approach to engage youth’s interest in STEM is through robotics; however, such programs are mostly for typically developing youth. The purpose of this study was to understand the development and implementation of an adapted robotics program for children and youth with disabilities and their experiences within it.

Method: Our mixed methods pilot study (pre- and post-workshop surveys, observations, and interviews) involved 41 participants including: 18 youth (aged 6–13), 12 parents and 11?key informants. The robotics program involved 6, two-hour workshops held at a paediatric hospital.

Results: Our findings showed that several adaptations made to the robotics program helped to enhance the participation of children with disabilities. Adaptations addressed the educational/curriculum, cognitive and learning, physical and social needs of the children. In regards to experiences within the adapted hospital program, our findings highlight that children enjoyed the program and learned about computer programming and building robots.

Conclusions: Clinicians and educators should consider engaging youth with disabilities in robotics to enhance learning and interest in STEM.

• Implications for Rehabilitation

• Clinicians and educators should consider adapting curriculum content and mode of delivery of LEGO^® robotics programs to include youth with disabilities.

• Appropriate staffing including clinicians and educators who are knowledgeable about youth with disabilities and LEGO^® robotics are needed.

• Clinicians should consider engaging youth with disabilities in LEGO^® to enhance learning and interest in STEM.

     

Health care and insurance loss of working AFDC recipients

The federal Omnibus Budget Reconciliation Act of 1981 (OBRA) produced substantial changes in the Aid to Families With Dependent Children (AFDC) program. The main effect of the changes has been the denial of assistance and hence Medicaid coverage to many AFDC recipients with jobs. Our analysis of the health care and insurance loss of working AFDC recipients in Hennepin County, Minnesota, found that the vast majority (87%) of families that were terminated from AFDC due to OBRA were able to remain off welfare and the majority (70% adults, 60% children) had private health insurance coverage 2 years later. These results highlight the dilemma facing state policymakers who want to develop successful programs to meet the health needs of the working poor, yet at the same time must cope with tight, short-term fiscal constraints.     

Youth and young adults with cerebral palsy: their use of physician and hospital services

OBJECTIVES: To examine patterns of health care utilization among youth and young adults who have cerebral palsy (CP) and to provide information to guide the development of health services for adults who have CP. DESIGN: This study analyzed health insurance data for outpatient physician visits and hospital admissions for a 4-year period. SETTING: Six children's treatment centers in Ontario, Canada. PARTICIPANTS: The sample included 587 youth and 477 adults with CP identified from health records. Youths were 13 to 17 years of age, and adults were 23 to 32 years of age at the end of the data range. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: We computed the annual rates of outpatient physician visits and hospitalizations per 1000 persons and compared these with rates for the general population. RESULTS: Annual rates of outpatient physician visits were 6052 for youth and 6404 for adults with CP, 2.2 times and 1.9 times higher, respectively, than rates for age-matched peers (P<.01). Specialists provided 28.4% of youth visits but only 18.8% of adult visits. Annual hospital admission rates were 180 for youth and 98 for adults with CP, 4.3 times and 10.6 times higher, respectively, than rates for age-matched peers (P<.01). CONCLUSIONS: It appears that youth and adults with CP continue to have complex care needs and rely heavily on the health care system. Comprehensive services are essential to support their health as they move into youth and adulthood. However, there appear to be gaps in the adult health care system, such as limited access to specialist physicians.     

Examining the Relationship Between Self-Determination and Quality of Life in Young Adults with Autism Spectrum Disorder

Promoting self-determination (SD) in youth with disabilities is positively related to better post-secondary outcomes, such as employment and independence. Despite extensive research into SD and quality of life (QoL) for people with intellectual and developmental disabilities, the relation between the two has not been examined for young adults with autism spectrum disorder (ASD) without intellectual disability (ID). The aim of this pilot study was to examine the relationship between two complementary measures of SD, namely the Arc’s Self-Determination Scale (Wehmeyer and Kelchner 1995) and the AIR Self-Determination Scale (Wolman et al. 1994), and QoL for young adults with ASD without ID. Thirty young adults with ASD without ID living in Canada completed self-report questionnaires of SD and QoL. Correlational analyses indicated that two measures of SD were significantly associated with QoL. Regression analyses revealed that individuals with higher SD scores reported higher perceptions of life satisfaction. Thus, SD, assessed by two complementary measures, was found to be positively associated with QoL. Subsequent research should further elucidate the association between SD and QoL and examine how best to promote SD as a means of enhancing the QoL of young adults with ASD as they transition into adulthood.     

Characteristics of individuals infected with the human immunodeficiency virus and provider interaction in the predominantly rural Southeast

BACKGROUND: This detailed study describes the demographic characteristics, behavioral characteristics, care-seeking behavior, and barriers to health care and social services for patients infected with the human immunodeficiency virus (HIV) in the Southeast. METHODS: We conducted a cross-sectional study of Medicaid-eligible HIV-positive individuals (chart abstractions [N = 679], patient surveys [N = 487]) and care providers (N = 101) in North Carolina. Relative risks compare blacks, women, and respondents reporting substance abuse with their reference groups. Results are compared with those of a larger sample including persons from Alabama and South Carolina. RESULTS: Forty-one percent of respondents did not receive care locally, and 69% of female respondents had young children at home. In the 12 months before the survey, 66% reported substance abuse; 49% reported multiple living situations; 11% had entered drug treatment; and 10% had difficulty with the law. The findings in North Carolina did not differ from those in Alabama and South Carolina. Mean indices from care provider surveys revealed low interagency knowledge and referrals. CONCLUSIONS: Patients have complex needs for both social services and health care. However, providers are not working together.     

Health Promotion for Individuals With Intellectual Disabilities in the Community

Few health promotion interventions exist for adolescents and young adults with intellectual disabilities. This project evaluated the feasibility and satisfaction with a health promotion curriculum, Health U., adapted to a community-based setting by a nurse practitioner for individuals with Down syndrome and intellectual disabilities. Results demonstrate that this program was feasible and positively impacted participants. Caregivers of program participants were highly satisfied and would recommend this program. Nurse practitioners are uniquely positioned to be leaders in establishing similar programs to meet the health promotion needs of this often-underserved population.     

A focus group inquiry into the perceptions of primary health care teams and the provision of health care for adults with a learning disability living in the community

This study addresses the primary health needs of adults with learning disabilities living in the community Policies specific to this client group and incorporating the ideology of normalization are noted and evidence of their implementation is sought Previous research suggests that the adoption of a social rehabilitative model of care may have resulted in the neglect of health care needs The recent closure of a local, subnormality hospital provided a critical situation and context for the study The research question is, how do primary health care teams perceive the needs of adults with learning disabilities living in the community, and are they meeting their needs' Three primary health care teams formed the sample and data were obtained through semi-structured, focus group interviews A conceptual framework developed early in the study influenced both the interview guide and the data analysis The study suggests that practitioners working within primary health care teams have a limited awareness of the health care needs of adults with learning disabilities Contributing factors were identified and include negative attitudes towards the concept of normalization, inadequate education, a shortfall in financial and human resources, and poor collaboration with the specialist team     

Perspectives on transitions: rethinking services for children and youth with developmental disabilities

Transition to adulthood for youth with developmental disabilities has become an important concern internationally of service providers working with these young people. Reflecting on the useful review by Binks and colleagues in this issue of the Archives, we argue as developmentalists that this is an ideal time to step back from our traditional preoccupation with "treatment" of childhood disability and to reconsider broadly what our goals for intervention ought to be. We invoke the concepts of the International Classification of Functioning, Health and Disability framework and draw on research that taps the voices of young people with disabilities-voices we believe have a lot to tell us about what has and has not worked for them. We suggest that there are unparalleled opportunities to enhance transition to adulthood for young people with developmental disabilities, in part by a feed-forward of the best of childhood services, and to work to prevent many of the difficulties faced by the current generation making this challenging transition.     

OFFENDING BY ADULTS WITH LEARNING DISABILITIES: IDENTIFYING NEED IN ONE HEALTH DISTRICT

The extent to which adults in one health district with intellectual disabilities engaged in offending behaviour and the nature of their need was investigated in a series of three studies. First, the number of adults who reported having learning difficulties or who had attended special needs schools, in a consecutive series of adults charged at a city police station over a two-month period, was identified. Secondly, the extent and nature of offending by those living in residential placements for people with learning disabilities was ascertained retrospectively for the year 1992. In addition, the policies and responses of the residences' managers to offending behaviour were ascertained. Thirdly, a case control study of the outcome in the criminal justice process of those with self-reported learning disabilities identified in Study One was undertaken. Twelve (4.4%) of the 251 people arrested and screened at the city police station had been to a special school for children with mild or severe learning disabilities. Seven (2%) of 358 adults living in residential placements for adults with learning disabilities had been interviewed by police because of an alleged offence. None of this group appeared in Court despite the seriousness of some offences. In Study One, seven (58%) were sentenced by the Courts. None received a prison sentence or were diverted to the health service. The lack of established links between the criminal justice agency and other services and the experience and attitudes of staff in the different agencies both hindered the recognition of the presence of a possible learning disability and also prevented referral across agencies. These and social factors, such as homelessness, all contributed to a failure to provide for the needs of this minority of adults with learning disabilities who became involved in the criminal justice system.     

Cost and utilisation of healthcare resources during rehabilitation after ankle fracture are not linked to health insurance, income, gender, or pain: an observational study

Question: What are the costs and utilisation of healthcare resources, their determinants, and quality of life for people attending outpatient physiotherapy after ankle fracture? Design: Longitudinal observational study. Participants: Ninety-four adults (2 dropouts) following cast removal after isolated ankle fracture attending outpatient physiotherapy at three hospitals in Sydney, Australia. Outcome measures: Costs incurred (direct healthcare costs and out-of-pocket costs) and utilisation of healthcare system resources were measured at 4, 8, 12, 16, 20, and 24 weeks. Quality of life was measured shortly after cast removal and at 4, 12, and 24 weeks. Factors known to influence costs and utilisation in other conditions (private health insurance, income level, gender, and pain) were also measured. Results: The total cost per person was AUD 735 (SD 876) over 24 weeks. Outpatient physiotherapy accounted for the highest costs in both direct healthcare (39%) and out-of-pocket (42%) costs. Less than 20% of participants sought private non-medical care in addition to receiving outpatient physiotherapy. None of the factors investigated had a significant influence on costs and utilisation. Quality of life score improved over the 24 weeks by a mean of 6.1 points out of 45 (95% CI 5.2 to 6.9), with most of the improvement occurring in the domain of independent living. Conclusion: Information on costs and utilisation of healthcare resources can be used to plan health services, eg, the number of physiotherapy sessions required after ankle fracture. Private health insurance, income level, gender, or pain did not influence the costs or the decision behind seeking care over and above publicly-provided physiotherapy.     

National survey of psychiatric mental health advanced practice nursing: development, process, and finding

A survey was sent to all Psychiatric Mental Health (PMH) Advanced Practice Registered Nurses (APRNs) who had a registered e-mail address with the American Nurses Credentialing Center, resulting in 1,899 usable surveys. The practice of two groups of APRNs was examined and contrasted: those certified to treat children and adolescents and PMH-APRNs certified only to treat adults. Our findings raise concerns about the numbers of PMH-APRNs treating children. Considering the national demand for mental health professionals prepared to treat children, the specialty must move to increase the number of qualified APRN child providers.