Lynda L Lahti Anderson

Prevalence of mental retardation and developmental disabilities: estimates from the 1994/1995 national health interview survey disability supplements.

In 1994 and 1995, the National Health Interview Survey included a Disability Supplement (NHIS-D) to collect extensive information about disabilities among individuals sampled as part of annual census-based household interview surveys. Here we describe the development and application of operational definitions of mental retardation and developmental disabilities to items in the NHIS-D to estimate prevalence. In our analyses, we estimate the prevalence of mental retardation in the noninstitutionalized population of the United States to be 7.8 people per thousand (.78%); of developmental disabilities, 11.3 people per thousand (1.13%); and the combined prevalence of mental retardation and/or developmental disabilities to be 14.9 per thousand (1.49%). Differences in prevalence estimates for mental retardation and developmental disabilities and among people of various ages are explored.

The State of the Science of Health and Wellness for Adults With Intellectual and Developmental Disabilities

Historically, people with intellectual and developmental disabilities (IDD) have experienced health disparities related to several factors including: a lack of access to high quality medical care, inadequate preparation of health care providers to meet their needs, the social determinants of health (e.g., poverty, race and gender), and the failure to include people with IDD in public health efforts and other prevention activities. Over the past decade, a greater effort has been made to both identify and begin to address myriad health disparities experienced by people with IDD through a variety of activities including programs that address health lifestyles and greater attention to the training of health care providers. Gaps in the literature include the lack of intervention trials, replications of successful approaches, and data that allow for better comparisons between people with IDD and without IDD living in the same communities. Implications for future research needed to reduce health disparities for people with IDD include: better monitoring and treatment for chronic conditions common in the general population that are also experienced by people with IDD, an enhanced understanding of how to promote health among those in the IDD population who are aging, addressing the health needs of people with IDD who are not part of the disability service system, developing a better understanding of how to include people with IDD in health and wellness programs, and improving methods for addressing the health care needs of members of this group in an efficient and cost-effective manner, either through better access to general medical care or specialized programs.

State Institutions: Thirty Years of Depopulation and Closure

Over the past 30 years, a number of social, political, and economic forces have influenced public policy decisions regarding residential services for persons with mental retardation and other developmental disabilities (MR/DD). One of the most striking outcomes of these forces has been a steady decrease of persons with MR/DD residing in state institutions. In this paper we show the changes over the past 30 years in state institutional populations, interstate variability, movement of individuals into and out of state institutions, costs of state institutional care, and state institution closures as a result of social policy.

Staff recruitment challenges and interventions in agencies supporting people with developmental disabilities

Recruitment challenges and costs were identified by administrators from 129 randomly selected agencies that provide residential, vocational, and other services to persons with developmental disabilities in Minnesota. Finding qualified applicants was the most difficult staffing problem reported. Common recruitment incentives included providing competitive benefits, allowing time off without pay, and offering paid leave time. Relatively few agencies used innovative strategies (e.g., bonuses for employees who recruit new workers). The average agency had vacancy rates of 6% in direct-support positions and 4% in first-line supervisor positions. On the basis of these findings, one could determine that the cost of advertising and overtime for vacant positions in Minnesota could approach

Factors associated with meeting physical activity guidelines by adults with intellectual and developmental disabilities.

6.7 million per year.

DEFINITIONS AND FINDINGS ON INTELLECTUAL

BACKGROUND Many individuals with intellectual and developmental disabilities (IDD) have sedentary lifestyles. AIMS (a) compare adults with IDD with the general adult population on adherence to U.S. physical activity (PA) guidelines, and (b) determine what factors predict adherence to PA guidelines by adults with IDD. METHODS We compared adults with IDD from the 2011-2012 National Core Indicators Adult Consumer Survey (NCI-ACS) with the general U.S. population on meeting PA guidelines. We examined the association of demographic, diagnostic, mobility, health and community participation variables with meeting PA guidelines by adults with IDD. RESULTS The rate for adults with IDD meeting PA guidelines (13.5%) was less than half that of the general population (30.8%). Among adults with IDD, at-risk groups included those with more severe disability, Down syndrome, mobility impairments, obesity, poor health, mental illness, no independent access to community exercise, and less frequent participation in community exercise. Going out for exercise was the only form of community participation associated with meeting PA guidelines. People who accessed the community for exercise independently (i.e., alone) were more likely to meet PA guidelines. CONCLUSIONS Interventions aimed at increasing PA for people with IDD should consider these factors in their design.

Physical Disability and Health Disparities

This article describes the use of the National Health Interview Survey-Disability Supplement (NHIS-D) to estimate the prevalence and general characteristics of persons with intellectual and/or developmental disabilities in the non-institutionalized U.S. population. It provides estimates of the populations of non-institutionalized persons with intellectual disability (defined categorically), with developmental disabilities (defined functionally) and with both. It describes how the prevalence of intellectual and/or developmental disabilities varies by age, poverty status and other demographic variables. It describes how intellectual disabilities and developmental disabilities are operationally different, and how the people identified in those groups differ substantially both in number and in demographic characteristics. An analysis of poverty status among adults reveals that poverty is significantly more common for women, people who were not white, people with intellectual or developmental disabilities, adults with less than 12 years of education, and people living with a spouse or alone (as compared to people living with relatives such as parents or siblings).

Barriers to Care

Individuals with ambulatory disabilities or mobility limitations comprise approximately 7% of the US population ages 5 and older. Persons with mobility limitations/physical disabilities are more likely to experience health disparities such as increased rates of hypertension, cardiovascular disease, or diabetes than persons without mobility limitations. Factors that increase health disparities include both upstream and downstream causes. Upstream causes include poverty, stress, and stigma. Downstream causes include lack of access stemming from insufficient resources to acquire needed care, equipment and space access, transportation challenges, and limited training for healthcare providers on providing appropriate care for individuals with disabilities. Addressing the key causes of health disparities includes policy-level changes that address poverty, ensuring access barriers are addressed through statute such as the Americans with Disabilities Act, improving data to enhance evidence-based decision-making, better training of healthcare providers, and including people with disabilities in public health campaigns.

Research in Social Science and Disability

Access to health care has long been a source of inequities for people with intellectual and developmental disabilities (IDD). People with IDD in the United States are much more likely than the general public to depend on publicly funded health care (primarily through Medicaid and Medicare) rather than private insurance, which may limit access to care and health outcomes. However, individuals with IDD with comprehensive insurance also experience barriers to care and poorer health outcomes than the general population. Recommended solutions include better access to preventative health screenings, better monitoring and treatment for chronic conditions common in the general population such as diabetes and hypertension, improved efforts to promote health amongst adults with IDD who are aging, more attention to the needs of people with IDD not in the long-term supports and services system, and more effective inclusion of people with IDD in health and wellness programs.

Unmet needs and quality of support for parents of transition-aged youth: Differences by disability group, age, and household income

Abstract Purpose This study examined access to and quality of supports for families of adolescents with disabilities. Methodology An online survey was completed by family members of transition-aged young adults who had participated in parent training sessions on topics related to transitions to adulthood. Survey responses came from all 50 states, the District of Columbia, and 4 U.S. territories. Findings More than one-third of families reported unmet information needs related to areas such as employment, housing, preparing for adult relationships, and preparing others to support the family members with disabilities. Families of younger transition-aged youth, youth with Autism Spectrum Disorder or other disabilities, and families with lower household incomes reported more unmet needs. The overall quality of services families reported receiving was 2.19 on a 4-point scale of 1 to 4. Parents reported needing more information and quality of supports related to the transition of youth from school to adulthood. Practical implications Given the scope of unmet needs, ongoing collaboration between schools, agencies, organizations, and other entities that serve families is critical. While schools play a key role in supporting the transition process, other organizations also have a role. Social implications The results from this survey demonstrate that the need for support is not limited to youth with disabilities, but that family members also have information and support needs related to their roles as caregivers in the transition process. Originality This survey provides information about unmet needs and current services from a national sample that includes often underserved populations and includes sufficient numbers of respondents to allow comparisons between families, based on the type of disability their family member had.