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PubMed2002

Nervous system disorders: a global epidemic.

Major new epidemiological analyses are focusing attention on disorders of the nervous system as important causes of death and disability around the world. One in every 9 individuals dies of a disorder of the nervous system. Stroke outweighs all other neurological disorders combined as a cause of mortality. Most disorders of the nervous system occur in developing countries. Developmental disability due to malnutrition, and cognitive dysfunction associated with parasitic infections are the most common neurological disorders. As the world's population ages and the effects of infectious disease decline, the relative effects of many disorders of the nervous system, including stroke and dementia, are increasing. The disorders of the nervous system causing the highest rates of death and disability are preventable and treatable. Increased awareness of the global effects of neurological disorders should help health care planners and the neurological community set appropriate priorities in research, prevention, and management of these conditions.

Cost of Illness↗

PubMedDate not supplied

Prevention of childhood disability in the People's Republic of China.

With a dramatic decrease in infant mortality, an emerging challenge facing modern medicine in China is chronic disabling conditions in infants and young children. According to the results of a national sampling survey in 1987, it is estimated that there are over 51 million people of all ages with disabilities, which accounts for 4.9% of the total population. One out every five families in China has a member who is disabled. For children under 14 years of age, the overall prevalence rate of disability is 2.66%. The prevalence rate of mental retardation is 1.8% which accounts for 66% of all disabled children. Mental retardation is the most frequent childhood disability. Research on factors contributing to disability indicates the complexity of the problem. The etiology of 47% of cases is unknown, 21% of cases result from damage prenatally, 3% are due to perinatal factors, 29% are acquired during infancy and early childhood. Efforts to prevent developmental disabilities among children can be classified in terms of primary, secondary and tertiary activities. The most important primary prevention activities consist of genetic counselling, immunization programmes, improved prenatal, perinatal and postnatal health care, and legislation. On the secondary preventive level, focus is primarily on prenatal diagnosis and newborn screening. Tertiary preventive efforts include special education and comprehensive rehabilitation services. While these prevention efforts have been established, they are insufficient to meet the needs of disabled children and their families. In the context of the one child per family policy in China, much more is needed, much more can be done to reduce childhood disability. In addition to strengthening prevention efforts at all 3 levels, special emphasis should be placed on (a) integration of existing primary health care systems with early intervention programmes, (b) public education and information, (c) personnel preparation, and (d) research and evaluation.

Adolescent↗

PubMed2006

Psychiatric symptoms and problem behaviours in people with intellectual disabilities.

BACKGROUND: Previous studies have suggested different patterns of associations between psychiatric symptoms and problem behaviours in people with intellectual disabilities (ID). The aim of this study was to investigate which problem behaviours are associated with specific psychiatric symptoms and the relative strength of these specific associations. METHOD: A cross sectional survey using the Psychiatric Assessment Schedule for Adults with Developmental Disabilities Checklist and the Disability Assessment Schedule was carried out in a sample of 214 adults with ID. RESULTS: Self-injurious and, to a lesser extent, aggressive problem behaviours were most associated with affective type symptoms. Screaming and destructive behaviours tended to be more associated with autism-related social impairment rather than conventional psychiatric symptoms. CONCLUSIONS: This study gives further evidence of associations between psychiatric symptoms and specific problem behaviours in people with ID. It may be particularly useful to consider the diagnosis of affective disorders if a person with ID shows self-injurious or aggressive behaviours.

Adult↗

PubMed1998

Service for people with disabilities.

A couple of years ago a newspaper commentator wrote that even though the current era compares unfavorably in many ways to American life in the 1940s and 50s, we are better off in one way. "We are kinder to one another," she said, remarking on how far we've come in how we treat people with disabilities or non-mainstream looks and lifestyles. We may sometimes verge on a mindless political correctness in our kindness, and we may sometimes practice such kindness through clenched teeth, but all in all, she said, we are better at it than we were forty years ago. The kindness has certainly extended to new groups of dental patients. At UOP, the Special Needs Clinic of the Department of Dental Practice has become symbolic of the school's outreach to formerly underserved communities. Since its founding in 1985 as an adjunct to the department, the Special Needs Clinic has wracked up an impressive list of accomplishments: It has included disabled teens and adults among the populations that UOP routinely serves in its community dental programs; advised state agencies on how to deal with disabled adults and their dental problems (and won more than $600,000 in consultant contracts from those same agencies); produced a preventive dentistry x-raying program that is used as a video on how to teach dental hygiene to developmentally disabled people that later shocked the department when it won the equivalent of an Oscar in its field against competition on far bigger budgets.

Adolescent↗

PubMed1992

Mothers' and fathers' perceptions of stress and coping with children who have severe disabilities.

Stress in families with children who have special needs, which has been the focus of much research interest, is usually assessed solely from a maternal perspective. In this study, the short form of the Questionnaire on Resources and Stress (QRS-F, Friedrich, Greenberg, & Crnic, 1983) was completed separately by mothers and fathers of children with severe developmental disabilities. To compare responses of mothers and fathers, we employed factor analysis of parcels using the parallel analysis criterion rather than the more traditional item level analysis with minimum eigenvalue criterion. Results indicated that the QRS-F differed only slightly in both factor structure and correlates as a function of parental gender. Overall, validity of the QRS-F for use with both mothers and fathers of children with severe disabilities was supported.

Activities of Daily Living↗

PubMed2000

Neonatal Psychoneuroimmunology: Emergence, Scope and Perspectives.

Interdisciplinary Neonatology investigates and cares for at-risk babies, including risk for developmental disabilities. Psychoneuroimmunology seeks to unravel relationships amongst behavioural, neural, endocrine, and immune processes, and their mutual role in maintaining health and treating disease. This article presents an integrative approach to the emergence, scope and perspectives of a new sub-discipline, i.e. Developmental Neonatal Psychoneuroimmunology. The Equilibrium Model (ThEM) proposed by Adamson-Macedo (1991) will be used as a way of representing coactions; within this frame, Gottlieb's experiential canalization (1991b) contributes an explanation of how the psychoneuroimmunological development of the preterm neonate can be facilitated.

Journal Article↗

PubMed2004

The extraordinary vulnerability of people with disabilities: guidelines for oral health professionals.

In the last 40 years, there has been a dramatic shift in living arrangements for people with disabilities from large state institutions to community-based care. This shift has required communities to increase their clinical capacity including oral health care systems. Oral health professionals must be cognizant that the rate of abuse and neglect experienced by people with developmental disabilities and other special needs is at least four times the rate experienced by the general population. These trends have resulted in additional responsibility on community oral health professionals to provide oral health services for many people who formerly lived in state institutions including recognizing and reporting suspected abuse and neglect. Oral health professionals must prepare themselves to successfully carry out these professional responsibilities.

California↗

PubMed2005

Person-centered planning training for consumer-directed care for the elderly and disabled.

Based on the need for a training program for person-centered planning SC Choice, a Real Choice/Independent Living Grant, included the development of training materials and a training program for the implementation of the transformation from agency case manager to care advisor. The development of this training included receiving the person-centered planning training currently used by the developmentally disabled agencies, as well as interviews and focus groups with interested staff and participants. A training program for the Elderly/Disabled Waiver population using adult learning techniques is described in detail Included in this training are the philosophy, the activities, and the necessary steps to complete person-centered planning for the transition of a case manager to a care advisor in a consumer-directed program for the elderly.

Aged↗

PubMedDate not supplied

Computational systems analysis of developmental toxicity: design, development and implementation of a Birth Defects Systems Manager (BDSM).

Birth defects and developmental disabilities remain an important public health issue worldwide. With the availability of genomic sequences from a growing number of human and model organisms and the rapid expansion of the public repositories holding large-scale gene expression datasets, a computational systems analysis of developmental toxicology can incorporate this vast digital information toward the realization of predictive models for complex disease. Here we describe the initial design, development and implementation of a Birth Defects Systems Manager (BDSM). The project was motivated by the need for a computational-bioinformatics infrastructure to manage vast digital information from functional genomics and for a new knowledge environment specifically engineered for the analysis of developmental processes and toxicities. Proof-of-concept tested BDSM using meta-analysis of gene expression data collected from different laboratories, technology platforms, and study models. The composite dataset incorporated 232 microarray comparisons of RNA samples by single or dual microarray platforms, cDNA or oligonucleotide based probes, and human or mouse sequence information. Preliminary results identified system-level features in the embryonic transcriptome as it reacted to various developmental-teratological stimuli. BDSM is open access through the worldwide web (http://systemsanalysis.louisville.edu/) and can be integrated with other bioinformatics tools and resources to advance the pace of discovery in birth defects research.

Animals↗

PubMed2006

Creating connections: a community capacity-building project with parents and youth with disabilities in transition to adulthood.

The transition to adulthood presents many challenges for youth with disabilities and their families. Barriers in the environment often limit the full inclusion of these youth in daily community life. The purpose of this paper is to describe a community capacity-building (CCB) approach to facilitating the transition to adulthood for youth with developmental disabilities and their families. A pilot project that used a CCB approach with this population in one community in southcentral Ontario is described. The results of a qualitative, participatory evaluation demonstrate the benefits and challenges of this approach, with themes of increased community connections for youth and a greater awareness of their strengths and capacities. The perceived outcomes of the participants and the "lessons learned" for future initiatives using a CCB approach with different populations are discussed, as well as the fit between community capacity-building and occupational therapy. This pilot project demonstrates that a CCB approach has the potential to assist youth with disabilities to participate within their own communities.

Adolescent↗

PubMed1992

Comparison of staff training strategies to promote generalized teaching skills.

Two studies compared the effectiveness of different strategies for promoting generalization of staff skills in teaching self-care routines to clients with developmental disabilities. In Study 1, 9 direct-care staff members of group homes were trained sequentially through four conditions; (a) the provision of written instructions, (b) performance-based training using a single client program exemplar and simulated clients (single case training), (c) performance-based training using actual developmentally delayed clients as trainees (common stimuli training), and (d) performance-based training using multiple client program exemplars with simulated clients (general case training). The results indicated that staff members did not reach all generalization criteria until general case training was provided. Because staff members had been trained sequentially through several conditions in Study 1, a second study controlled for potential sequence effects. In Study 2, 7 staff members were trained using only the general case strategy after baseline. All staff members reached generalizations criteria with only general case training, replicating the findings of Study 1. Together, the two studies demonstrated that the general case training strategy was more effective at promoting generalized training effects across clients, settings, and client programs than other commonly used staff training approaches.

Activities of Daily Living↗

PubMed2002

Selected trends in public spending for MR/DD services and the state economies.

In this article we summarize mental retardation/developmental disabilities (MR/DD) spending since 1977, with emphasis on spending during the period 1995-2000. The change in state economic conditions, from strong growth in recent years to fiscal constraint in 2002, is also addressed. Spending data presented here are from the seventh State of the States in Developmental Disabilities (Braddock, 2002). Selected state-by-state information is also available at the study's website: http://www.cu.edu/ColemanInstitute/stateofthestates.

Financing, Government↗

PubMed1995

Employment supports for people with mental illness.

People with psychiatric disabilities often require extensive support to maintain employment. The authors describe five areas that supported employment programs should carefully examine when creating a supportive workplace environment: "natural" co-worker supports, personal network supports, training supports, self-management supports, and organizational supports. The different support needs of persons with developmental disabilities and those with psychiatric disabilities are highlighted, particularly in regard to how social stereotypes of these two groups influence decisions about how to provide support. The authors also discuss strategies that can be used by transitional employment programs for creating more effective supports within the limitations of the transitional setting.

Employment, Supported↗

PubMed2002

Repetitive behaviors in autistic disorder.

INTRODUCTION: Repetitive behaviors are common in autistic disorder, as in other developmental disabilities. Behaviors as diverse as stereotypies, cognitive inflexibility, and a need for sameness are grouped together under DSM IV classification, even though they are diverse in phenomenology, underlying neural circuitry, and possible clinical significance. In order to better define repetitive behaviors, we studied the relationship between such behaviors and chronological age, developmental level, estimated IQ, presumed mood state, severity of illness, as well as behavior reactivity to environmental stimuli, in a group of 121 consecutive autistic children, aged 2-4 and 7-11 years. RESULTS: Younger autistic children displayed more motor and sensory repetitive behaviors. Older children had more complex behaviors. Children with higher IQ scores, likewise, demonstrated more complex repetitive behaviors. Most motor behaviors and self injury showed features of reactivity. CONCLUSIONS: Certain "repetitive" activities may not represent core features of autistic disorder and may be equivalent to normal motor and cognitive behaviors, as seen during typical development.

Age Factors↗

PubMed1993

Gram-negative enteric bacillary meningitis: a twenty-one-year experience.

We reviewed our experience with gram-negative enteric bacillary meningitis in neonates and infants from 1969 through 1989. Ninety-eight patients were identified. Their ages were from 1 day to 2 years with a median of 10 days. In 25 patients (26%), predisposing factors were identified, the most common of which were neural tube defects and urinary tract anomalies. The causative agents were Escherichia coli (53%), Klebsiella-Enterobacter species (16%), Citrobacter diversus (9%), Salmonella species (9%), Proteus mirabilis (4%), Serratia marcescens (3%), Bacteroides fragilis (3%), and Aeromonas species (2%). At the time of diagnosis, Gram-stained smears of cerebrospinal fluid revealed gram-negative bacilli in 61% of patients. The causative organism was cultured from blood obtained from 55% of patients, and 21% had positive urine culture results. The cerebrospinal fluid leukocyte counts ranged from 0 to 80,600 cells/mm3, and the cerebrospinal fluid/serum glucose concentration ratio was less than 0.5 in 72% of patients. Antimicrobial regimens varied greatly. After initiation of antibiotic therapy, an average of 3 days was needed for eradication of bacteria from cerebrospinal fluid. The case-fatality rate was 17%, and 61% of survivors had long-term sequelae that included seizure disorders, hydrocephalus, physical disability, developmental delay, and hearing loss.

Anti-Bacterial Agents↗

PubMed1999

Direct service staff and their perceptions of psychotropic medication in non-institutional settings for people with intellectual disability.

Previous studies have surveyed a variety of service providers in school and institutional settings, and reported a pervasive lack of education and training with regard to the use of psychotropic medication in people with intellectual disability. Because an increasing number of people with intellectual disability are living in the community and since many of these people receive psychotropic medications, the present study extended research in this area by surveying direct service staff to determine their perceptions, knowledge and opinions with regard to the use of psychotropic medication in non-institutional settings for individuals with developmental disabilities. Consistent with the findings of previous studies, a majority of the 334 respondents in the present study reported that they had not received adequate training in the area of drug treatment The knowledge and skills deficits of direct service staff appear to represent a significant barrier to the appropriate monitoring and management of pharmacotherapy for individuals with intellectual disability. Therefore, a systematic training programme to educate direct service staff about psychotropic medication needs to be designed, implemented and disseminated on a broad scale.

Attitude of Health Personnel↗

PubMed2003

The Hissom closure outcomes study: a report on six years of movement to supported living.

Changes in quality of life observed in 254 people with developmental disabilities who moved from a large state institution to supported living settings as a result of a court ordered closure of Hissom Memorial Center in Oklahoma were reported. Using pre-post measures on a multitude of qualities of life, we measured significant improvements between 1990 and 1995 in class members' adaptive and challenging behaviors, participation in employment, number of hours of developmentally oriented services, opportunities for integration, frequency of contact with relatives, and use of antipsychotic medications. We noted concern regarding health care, where there was a need for easier access to health professionals in community settings.

Adaptation, Psychological↗

PubMed2004

Addressing health disparities through dental-medical collaborations, Part III: Leadership for the public good.

This is the third in a series of articles featuring dental-medical collaborations to reduce oral health disparities. Previous articles have targeted disparities among children, the elderly, and those with mental retardation and developmental disabilities and the importance of cultural factors in health disparities. Articles in this third group describe projects that originated in the public health sector or utilize public health approaches. They include training of non-dental providers and Head Start/Early Head Start workers in children's oral health promotion; case management to ensure early preventive medical, dental, and developmental services for children; and a dental school-led outreach, training, and research effort to address oral cancer disparities. In this introductory article, we review lessons learned from the entire series of projects reported in these articles. The primary take-home message is that educational changes are needed in dental and medical training to better address oral health disparities. Other important lessons include the value of local or state-specific data, the need for partnerships with key stakeholders, and the role of financial incentives in leveraging change. We recommend more attention to outcome assessments in educational initiatives, greater partnering with families and patients, and utilization of change-management methodologies with systems, providers, and patients. We also advocate increased collaboration with the public health sector and bold leadership in dental education.

Adolescent↗