Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth ...with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after patients were seen in clinic. Although many PCPs found the clinic and resources useful, individual and systemic barriers often prohibited them from participating in transition planning for this patient population. These findings highlight systemic barriers that need to be addressed to ensure successful transition, as well as the need for a specialized Transition Clinic with involvement of specialists with expertise in IDD, such as Developmental-Behavioral Pediatrics, to assist throughout transition process.
Objective:
To assess the role that social contextual factors exert on the way people with disproportionate short stature (dwarfism) cope with the negative consequences of discrimination.
Method:
...Using multigroup structural equation modeling, we compare the coping process of people with dwarfism from Spain (N = 63) and the USA (N = 145), two countries that differ in the role played by organizations offering support to people with dwarfism.
Results:
In Spain, where organizational support is recent, a coping approach aimed at achieving integration with the majority group through limb-lengthening surgery prevails; in the USA, where the long-standing organization of people with dwarfism encourages pride in being a "little person" and positive intragroup contact, a coping strategy based on empowering the minority group dominates.
Conclusions:
Both strategies, each in its own context, are effective at protecting psychological well-being from the negative consequences of stigmatization; however, they exert their positive effects through different processes.
Full text
Available for:
CEKLJ, FFLJ, NUK, ODKLJ, PEFLJ
113.
Mencap Marsden, Daniel
Nursing Standard (2014+),
2015-Jun-17, 2015-06-17, 20150617, Volume:
29, Issue:
42
Journal Article, Book Review
Peer reviewed
Learning Disability Week - June 15-21 - is the perfect time to review the important and vast array of resources available via the Mencap website.
To assess the impact of inclusive eye health programs for people with disabilities.
A synthesis evaluation study.
A cross-disciplinary team of ophthalmologists, evaluation, and disability-inclusive ...development advisors purposively selected evaluation reports of CBM-supported inclusive eye health programs in low- and middle-income countries. Employing a change-promoting paradigm, salient achievements and challenges were narratively analyzed and recommendations suggested based on a previously developed framework for strengthening disability inclusion in eye health programs.
Evaluations from 10 programs implemented in 6 countries (Cambodia, Egypt, Ethiopia, Indonesia, Pakistan, Vietnam) from 2011 to 2016 were identified. Training of medical staff and government officials resulted in increased awareness about disability rights and improved physical accessibility of eye health facilities. Relevant information about inclusion in eye health was incorporated in national eye health training curricula in some countries. Information, education, and communication material about eye health neglected patients with hearing and learning impairments. An overly narrow focus on disability inclusion confounded intersectoral barriers to eye health services. Collaboration of eye health staff with disability peoples organizations improved significantly but evidence of its impact was elusive. Collection of disability-disaggregated data posed significant challenges and made it difficult to demonstrate increased access to eye health programs by people with disabilities.
Introduction of disability inclusion in eye health systems of countries with limited resources poses significant challenges. Future programs striving to improve access to eye health services for marginalized populations including people with disabilities might consider more flexible and contextualized approaches.
Services for older adults and younger people with disabilities are increasingly merging, as reflected in the creation of Aging and Disability Resource Centers (ADRCs). Using ADRCs to coordinate ...services is challenging, primarily because these fields have different service delivery philosophies. Independent Living Centers, which serve people with disabilities, have a philosophy that emphasizes consumer control and peer mentoring. However, the aging service delivery philosophy is based in a case management or medical model in which the role of consumers directing their services is less pronounced. Using institutional logics theory and a qualitative research design, this study explored whether a unified service delivery philosophy for ADRCs was emerging. Based on focus groups and questionnaires with staff from ADRCs, findings revealed that competing service delivery models continue to operate in the aging and disability fields.
For the first time, adults with intellectual and developmental disabilities (I/DD) are living to experience old age. The purpose of this project was to assess the activities of aging and disability ...resource centers (ADRCs) as they seek to serve older adults with intellectual disabilities and their family caregivers. Data come from 21 in-depth qualitative interviews with ADRC staff in seven states. Results of this qualitative analysis indicate that ADRCs are not focusing explicitly on adults aging with I/DD and their family caregivers, but meeting the needs of this population is a future goal of ADRCs. Challenges related to accessing and providing information and referral services for adults aging with I/DD were described and highlight existing unmet needs of this population. Supporting adults who simultaneously require aging and disability services requires true coordination of aging and disability service systems.
We report on the experience of a family in which the youngest child has acquired brain injury and the struggle undertaken by the family to improve the neurorehabilitation resources in the public ...health service. The article outlines the main demands, from the socio-familial point of view, as regards the improvement of neurological rehabilitation and the resources needed to deliver it.
Persons with disabilities constitute one of the most vulnerable groups in every society; their identification, assessment and care present a major challenge. In 2001-2003, Cuba conducted the first ...comprehensive national study of persons with disabilities in the Americas. In 2007-2010, the study was replicated in Bolivia, Ecuador, Nicaragua, Saint Vincent and the Grenadines, and Venezuela, at their governments' request. Study results have enabled implementation of strategies with substancial impact on human health in these countries. In response to it, more than a million medical consultations were provided by professionals whose specialties are lacking in the participating countries, including 139,772 clinical genetic consultations. Once each country's needs were identified, Cuba provided technical assistance with equipment supplied by Venezuela. The study led to development of public policies and programs for disability prevention and care of disabled persons in Bolivia, Ecuador, Nicaragua and Venezuela, and the opening of the National Medical Genetics Center and orthotic and prosthetic laboratories in Venezuela, and rehabilitation centers in Bolivia. KEYWORDS Disability, epidemiology, health services research, needs assessment, human resources, workforce, Bolivia, Cuba, Ecuador, Nicaragua, Saint Vincent and the Grenadines, Venezuela.
Significant gaps in care and limited existing models establish the need to innovate systems of care for youth with special health care needs in the transition between pediatric to adult health care ...settings.
Using implementation science, a statewide transition support program was created. University and community partners explored needs and adopted a strategic plan and funding sources. The existing consensus statement provided a framework. A team was hired, policies were piloted and the initial ambulatory consultative transition service for youth with special needs ages 11 to 22 was launched. Full program activities during year four were analyzed.
During 2011, there were 139 consultations for youth with intellectual disability and/or physical disability (average 16.74 years, 46% female). Services include routine and focused co-morbidity screening and recommendations, care coordination of complex health and community service needs, and support for families. The evolving transdisciplinary team adapted their methods to collaborate with a growing population of youth and primary care providers.
A statewide transition support program is a viable delivery model to provide needed resources for youth, families and primary care practices. Weekly improvement meetings continue to adapt services to sustain family satisfaction and community provider satisfaction.
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