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We compare the deinstitutionalization of psychiatric patients and the developmentally disabled in the United States and demonstrate that there were two path-dependent processes with significant qualitative and quantitative differences, ultimately leading to better outcomes for developmentally disabled individuals.

Using secondary literature, we construct a sustained comparison of the two processes in terms of outcomes, timing, tempo, extent, funding, demographic composition, and investment in community services. We then reconstruct the strategies of de-stigmatization and framings of moral worth deployed in the two cases, analyzing their effects on deinstitutionalization in terms of conceptions of risk, rights, and care.

Deinstitutionalization began later for developmentally disabled individuals than for psychiatric patients, and was a more gradual, protracted process. It was not driven by fiscal conservatism, discharges, and the trans-institutionalization of the senile aged, as was deinstitutionalization for psychiatric patients, but primarily by the prevention of institutionalization of young children, and increased investment in infrastructure. Consequently, the deinstitutionalization of the developmentally disabled was far more thorough and successful. The process was shaped by the framing of the developmentally disabled as “forever children” by parents’ organizations that demanded a balance between autonomy, protection, and the provision of care. In contrast, the deinstitutionalization of psychiatric patients was shaped by their framing as autonomous citizens temporarily suffering from “mental health problems” that could be prevented, treated, and cured. This frame foregrounded the right to choose (and also refuse) treatment, while undervaluing the provision of care.

This chapter explores the parental experiences of 21 mothers of young and/or adult children who have been diagnosed with developmental disabilities (DD). Specific attention is paid to mothers’ reflections on marginalization, stress, and resiliency. Intersectionality of marginalization was explored with a select number of participants who identified with minority racial groups, with the LGBTQ community, and/or as a single or young mother. Data were collected via semi-structured interviews and analyzed using the constant comparative method. Eighteen mothers reported experiencing elevated levels of stress specifically related to challenges associated with DD; the need for greater investments of time and money was emphasized. However, nearly every participant highlighted stories of resilience and acclimation to these challenges associated with raising a child with DD. Thirteen mothers overtly discussed experiences of discrimination and marginalization. Some of these scenarios included being stared at or criticized in public, being excluded from social events, and facing discrimination within school settings. Select participants from marginalized backgrounds (being as a young parent, or as Black, single, lesbian, bisexual, and/or transgender) provided insight into how layers of marginalization negatively impacted their parental experiences. These personal accounts provide additional evidence that mothers of children with DD experience courtesy stigma. In addition, they provide a holistic illustration of motherhood experiences that does not center on only negative or positive aspects. Finally, the reports of mothers who identified with multiple marginalized identities strengthen the call for additional empirical focus on intersectionality as it concerns mothers of children with DD.

A sizable cohort of youth with autism spectrum disorder (ASD) will transition into adulthood over the next 10 years. Employment participation is an important part of individual economic independence but also of one's ability to contribute to broader civil society in meaningful ways. Yet, to date, the majority of young adults with autism are not successfully entering the workforce. Of particular importance for this “Generation A” will be to establish a sound foundation as they exit their teenage years that includes postsecondary educational pursuits and labor force involvement. Exploring corresponding outcomes of individuals with ASD who recently progressed through these life stages will help inform Generation A and families and educators who support them how to better prepare for the workplace of the future. For this purpose, robust representative data containing refined disability detail, employment and training information, and well-being and support content are necessary. Currently available public survey and administrative microdata that can be used by researchers and practitioners as they delve into these issues are discussed. Additionally, appropriate restricted-access datasets and the process involved in obtaining them are highlighted. After summarizing key resources and noting their advantages, their drawbacks, limitations, and areas for improvement are addressed. Implications of the data available to date to assist educators, family members, and young adults with autism themselves to better navigate the transition from school to work, to successfully secure work, and ultimately economic independence, which is critical to adulthood, are presented.

Simpson (2005) reported that although children with DD and autism can benefit from the use of AT, the potential for use of this medium by this population remains largely unexplored. According to Simpson, AT may be an effective intervention to address student needs in: (a) communication, (b) matching, (c) spelling, (d) problem solving, (e) alertness, (f) motivation and behavior, (g) task completion, and (h) self-help. In addition, AT may be effective with students with DD and autism because these students love playing with a computer due to the predictability of its activities (see Thorp, 2007). Furthermore, computers provide stimulating visual images that children with DD and autism crave.

The purpose of this study was to assess lifetime economic costs for people with four developmental disabilities (DDs): mental retardation, cerebral palsy, hearing loss, and vision impairment. Estimates were generated for direct medical costs, direct non-medical costs, and productivity losses resulting from increased morbidity and premature mortality. Findings suggest that lifetime costs, in excess of costs for individuals without DDs, are approximately $870,000 per person for mental retardation and $800,000 per person for cerebral palsy (in 2000 dollars). Analogous cost estimates for hearing loss and vision impairment are approximately $330,000 and $470,000, respectively. Roughly four-fifths of total costs reflect productivity losses.

Spanish-speaking children learn to read words written in a relatively transparent orthography. Variations in orthographic transparency may shape the manifestation of reading difficulties. This study was intended to help clarify the nature of developmental dyslexia in Spanish. Developmental dyslexic group (DD) were compared to two control groups, a chronological age-matched control group (CA) and a reading level-matched control group (RL). Measures included naming speed, verbal working memory (WM), phonological short-term memory (STM), phonemic awareness, and different reading subtests (letter, word and pseudoword reading, punctuation mark, reading skills). On the reading subtests, accuracy and reading speed were measured. Results demonstrated that developmental dyslexics show a severe deficit in lexical access on accuracy and speed measures, in addition to reading-related cognitive deficits in areas such as naming speed, verbal WM, phonological STM, and phonemic awareness. Hierarchical cluster analysis demonstrated that a subgroup of children with DD showed lower IQs and more severe reading-related cognitive deficits in naming speed, verbal WM, and phonological STM. Our results are consistent with studies conducted in the Spanish language and in other transparent orthographies.

This study examined access to and quality of supports for families of adolescents with disabilities.

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.

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.

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.

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.

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.