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1.
Intellect Dev Disabil ; 62(3): 200-210, 2024 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-38802099

RESUMO

This article describes research on the places people with intellectual and developmental disabilities (IDD) live and disparities in housing and long-term services and supports (LTSS) outcomes for people with IDD from racially and culturally minoritized groups. It also summarizes the conclusions and recommendations of the Housing and Long-Term Services and Supports strand of the 2022 State of the Science Conference on the Intersection of Diversity, Equity and Inclusion and Supports and Services for People with IDD, identifies limitations of the available research and recommends strategies to improve research, knowledge translation, and practices.


Assuntos
Deficiências do Desenvolvimento , Habitação , Deficiência Intelectual , Assistência de Longa Duração , Humanos , Deficiência Intelectual/etnologia , Diversidade Cultural , Disparidades em Assistência à Saúde
2.
Intellect Dev Disabil ; 57(5): 376-389, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31568737

RESUMO

Public health and policy planning for adults with intellectual and developmental disabilities (IDD) is imperiled by the lack of ongoing national surveillance data on prevalence and health status. In 2018, the Administration on Intellectual and Developmental Disabilities appointed a workgroup of representatives from key federal agencies and national experts to recommend strategies to improve prevalence estimates and health surveillance for people with IDD. This article presents the workgroup findings on the availability of prevalence and health surveillance data for adults with IDD and suggested items that could identify respondents with IDD on national surveys with special attention to modifications in the National Health Interview Survey. We identify core constructs that must be measured to identify sample members with IDD in population surveys, and additional constructs which, if measured, would support more comprehensive identification of sample members and enhance ongoing surveillance of the health status, outcomes, and unmet needs of this population. We conclude with a brief review of methodological considerations to improve IDD national surveillance including cultural and linguistic sensitivity and the inclusion of U.S. territories in national surveillance protocols.


Assuntos
Deficiências do Desenvolvimento/epidemiologia , Deficiência Intelectual/epidemiologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Nível de Saúde , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Adulto Jovem
3.
Intellect Dev Disabil ; 57(5): 421-438, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31568738

RESUMO

This systematic review examined 14 U.S. studies published since 2000 reporting prevalence estimates for intellectual disability (ID) or developmental disability (DD). Prevalence rates for children were between 11.0 and 13.4 per 1,000 for ID and between 45.8 and 69.9 per 1,000 for DD using data from 2010 or later. A 2015 Ohio study of adults yielded a prevalence estimate of 41.0 per 1,000 for DD. The only study of ID in adults and the only study incorporating DD Act definitions used the 1994/1995 NHIS-D yielding prevalence estimates for ID and/or DD of 38.2 per 1,000 for children birth to 5 years, 31.7 for children 6 to 18 years, and 7.9 per 1,000 for adults. Notable differences in prevalence estimates by age and operational definition have important implications for public policy and research. Serious surveillance gaps limit our understanding of service utilization rates, unmet needs, and health and other outcomes for adults with ID or DD.


Assuntos
Deficiências do Desenvolvimento/epidemiologia , Deficiência Intelectual/epidemiologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Vigilância da População , Prevalência , Estados Unidos/epidemiologia , Adulto Jovem
4.
Am J Intellect Dev Disabil ; 124(2): 157-173, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30835526

RESUMO

Two non-U.S. quasi-experimental studies reported Active Support training was associated with increased engagement in individuals with IDD, but no randomized controlled trials (RCTs) exist. We evaluated effects of Active Support training on staff assistance, and social and nonsocial engagement in 75 individuals with intellectual and developmental disabilities (IDD) in U.S. group homes. We detected no significant effects of active support training. Individuals with more skills and less challenging behavior engaged more in nonsocial activities. Younger individuals with more skills living in homes with fewer staff changes were more socially engaged. Factors associated with nonsocial engagement mirrored those reported in Qian, Tichá, Larson, Stancliffe, & Wuorio, (2015) . Staffing-related implementation challenges and statistical power limited our ability to detect differences.


Assuntos
Deficiências do Desenvolvimento/reabilitação , Capacitação em Serviço/métodos , Deficiência Intelectual/reabilitação , Participação do Paciente/estatística & dados numéricos , Apoio Social , Adulto , Deficiências do Desenvolvimento/psicologia , Feminino , Lares para Grupos , Humanos , Deficiência Intelectual/psicologia , Masculino , Participação do Paciente/psicologia , Inquéritos e Questionários , Estados Unidos
5.
Intellect Dev Disabil ; 53(3): 163-81, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26107851

RESUMO

An important line of research involves asking people with intellectual and developmental disability (IDD) to self-report their experiences and opinions. We analyzed the responsiveness of 11,391 adult users of IDD services to interview questions from Section 1 of the 2008-2009 National Core Indicators-Adult Consumer Survey (NCI-ACS). Proxy responses were not allowed for the selected questions. Overall, 62.1% of participants answered the questions and were rated by interviewers as understanding the questions and as responding consistently. Most participants responded in an all-or-none fashion, answering either all or most questions or few to none. Individuals with milder levels of IDD and with speech as their primary means of expression were more likely to answer the questions and provide a scoreable response. Interviewer ratings of interviewees' answering questions, understanding of questions, and consistent responding were each related to responsiveness.


Assuntos
Deficiências do Desenvolvimento/psicologia , Deficiência Intelectual/psicologia , Participação do Paciente/estatística & dados numéricos , Autorrelato , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Programas Governamentais , Humanos , Entrevistas como Assunto , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Estados Unidos , United States Dept. of Health and Human Services , Adulto Jovem
6.
Intellect Dev Disabil ; 50(6): 486-504, 2012 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23256691

RESUMO

This article examines everyday choices made by 8,892 adults with intellectual and developmental disabilities (IDD) and support-related choices made by 6,179 adults with IDD receiving services from 19 state developmental disabilities program agencies that participated in the 2008-2009 National Core Indicators Project. Controlling for physical and sensory impairment, age, behavioral support, communication, and state, people in residential settings with 16 or more people had less everyday choice than those in other living arrangements. People with mild and moderate IDD had more control over everyday choices when living in their own homes, whereas people with severe and profound IDD had more control when living in agency homes of 3 or fewer residents. For people of all levels of IDD, institutional settings of 16 or more residents offered the lowest levels of everyday choice. Controlling for the same covariates, individuals with all levels of IDD living in their own homes had significantly more support-related choices than those in any other residential arrangement. Controlling for individual and residential setting characteristics, the state in which sample members lived was notably predictive of support-related choice. Overall, the tested variables accounted for 44% of the variability in everyday choice and 31% in support-related choice.


Assuntos
Comportamento de Escolha , Deficiências do Desenvolvimento/psicologia , Deficiência Intelectual/psicologia , Autonomia Pessoal , Adulto , Feminino , Humanos , Masculino , Estados Unidos
7.
Intellect Dev Disabil ; 50(2): 92-108, 2012 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-22642964

RESUMO

This study describes service users with Down syndrome (N = 1,199) and a comparative sample with intellectual and developmental disabilities but not Down syndrome (N = 11,182), drawn from National Core Indicator surveys of adult service users in 25 U.S. states. Individuals with Down syndrome were younger than were individuals without Down syndrome. Men with Down syndrome were older than women with Down syndrome, whereas the reverse was true of the individuals without Down syndrome. Most (68%) people with Down syndrome had mild or moderate intellectual disability. The prevalence of vision impairment, hearing impairment, and physical disability increased with age. Adults with Down syndrome were more likely to have Alzheimer's dementia, have a hearing impairment, or be overweight, but they were less likely to have a physical disability than those without Down syndrome. Adults with Down syndrome were less likely to live in institutions or their own home, but they more likely to live in a family member's home. The results of a logistic regression showed that participants were more likely to be reported to be overweight if they had Down syndrome, were female, and were physically inactive, but they were less likely to be reported to be overweight if they were older, had more severe intellectual disability, had cerebral palsy, or were not independently mobile.


Assuntos
Pessoas com Deficiência/estatística & dados numéricos , Síndrome de Down/epidemiologia , Instituições Residenciais/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Paralisia Cerebral/epidemiologia , Comorbidade , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Sobrepeso/epidemiologia , Prevalência , Fatores Sexuais , Estados Unidos/epidemiologia
13.
J Nucl Med Technol ; 37(3): 173-8, 2009 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-19692454

RESUMO

UNLABELLED: The Society of Nuclear Medicine (SNM) published procedure guidelines for thyroid imaging in 1999. We wished to determine how many clinics performing thyroid imaging follow the guidelines and to what extent. Of particular interest to us was the choice of collimator. METHODS: We developed a 10-question survey to obtain information on how hospitals perform thyroid imaging. The questions were designed to cover the procedure recommendations of the SNM guidelines. The survey was sent to 350 hospitals randomly selected from 11 states in the northeastern United States. RESULTS: One hundred sixty-five surveys (47%) were returned. Most of the clinics that responded obtain a history, hyperextend the neck, and obtain anterior and anterior oblique views. Twenty-five percent of the respondents obtain all their images with a parallel-hole collimator. Seventy-five percent use a pinhole collimator or a combination of parallel-hole and pinhole collimators. The number of counts and time used for acquiring the images vary greatly. Less than half the respondents palpate the neck for correlation with the scan. CONCLUSION: The survey results indicated that many clinics do not follow the recommendations of the SNM guidelines. The major deviations from the guidelines were in the choice of collimator, the number of counts or amount of time used to acquire images, and the lack of neck palpation for correlation with the scan.


Assuntos
Coleta de Dados , Fidelidade a Diretrizes/estatística & dados numéricos , Medicina Nuclear/estatística & dados numéricos , Tomografia por Emissão de Pósitrons/estatística & dados numéricos , Padrões de Prática Médica/estatística & dados numéricos , Padrões de Prática Médica/normas , Doenças da Glândula Tireoide/diagnóstico por imagem , Glândula Tireoide/diagnóstico por imagem , Humanos , Medicina Nuclear/normas , Doenças da Glândula Tireoide/epidemiologia , Estados Unidos
18.
Am J Ment Retard ; 109(6): 481-500, 2004 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-15471514

RESUMO

The impacts of direct support professional turnover, wages, and vacancy rates as reported in interviews with 372 adult service recipients and 20 county managers and surveys of 183 families, 520 service coordinators, 228 direct support professionals, and 184 residential and 82 vocational managers were examined. Direct support professional turnover, wages, and vacancy rates were reported to be barriers to high quality supports, serving people waiting for services, and providing in-home or respite services. Higher direct support professional turnover was associated with lower wages and supports in urban counties. Multivariate analyses of covariance revealed a complex pattern of significant associations between quality of life outcomes; level of mental retardation, medical status, site size (for vocational settings); and direct support professional vacancy rates, average wage, and turnover rates.


Assuntos
Comportamento do Consumidor , Readaptação ao Emprego , Assistência Domiciliar , Deficiência Intelectual/reabilitação , Reorganização de Recursos Humanos/estatística & dados numéricos , Qualidade de Vida , Educação Vocacional , Adolescente , Adulto , Administração de Caso/estatística & dados numéricos , Serviços Comunitários de Saúde Mental , Feminino , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Assistência Domiciliar/psicologia , Humanos , Deficiência Intelectual/psicologia , Masculino , Minnesota , Admissão e Escalonamento de Pessoal/estatística & dados numéricos , Garantia da Qualidade dos Cuidados de Saúde/estatística & dados numéricos , Instituições Residenciais , População Rural/estatística & dados numéricos , Salários e Benefícios , População Urbana/estatística & dados numéricos , Recursos Humanos
19.
Ment Retard ; 42(2): 122-35, 2004 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-15008631

RESUMO

Although frontline supervisors are responsible for on-site management, supervision, and training of direct support professionals, research on the nature, content, and skills of the frontline supervisor role is rare. In this paper we describe results of 12 job analysis and three validation focus groups constituted to describe core competencies for supervisors in organizations providing community supports for people with disabilities. The focus groups involved 146 participants, including 97 direct support professionals, 40 frontline supervisors, and 7 managers who supervise frontline supervisors. The focus groups identified 14 competency areas in which frontline supervisors need to be proficient. In each competency area, between 4 and 26 specific competency statements were identified (a total of 142) along with 340 performance indicators.


Assuntos
Serviços Comunitários de Saúde Mental/organização & administração , Deficiência Intelectual , Gestão de Recursos Humanos , Competência Profissional , Papel Profissional , Apoio Social , Adolescente , Adulto , Idoso , Feminino , Grupos Focais , Comportamento de Ajuda , Humanos , Masculino , Pessoa de Meia-Idade , Meio-Oeste dos Estados Unidos , Relações Profissional-Paciente , Estados Unidos , Recursos Humanos
20.
Am J Ment Retard ; 107(4): 302-20, 2002 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-12069649

RESUMO

Adaptive and challenging behavior changes associated with movement from Minnesota's state institutions to community homes were examined. Most of the 148 participants who moved had severe or profound mental retardation, significant challenging behavior, and several decades of institutionalization. Adaptive and challenging behavior were assessed in the institution and thereafter annually in the community. Relative to institutional levels, adaptive behavior declined among residents who moved to community ICFs/MR but was unchanged for the HCBS Waiver group. Challenging behavior tended to worsen initially but, except for internalized behavior, no longer differed from institutional levels by the second community assessment. Change in challenging behavior was unrelated to community residence type. Previous papers involving these participants showed consistent lifestyle enhancements and reduced service costs relative to the institution.


Assuntos
Adaptação Psicológica , Desinstitucionalização , Deficiência Intelectual/psicologia , Deficiência Intelectual/reabilitação , Transtornos do Comportamento Social/complicações , Atividades Cotidianas , Adulto , Feminino , Lares para Grupos , Humanos , Deficiência Intelectual/complicações , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade
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