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STATE OF THE STATES IN DEVELOPMENTAL DISABILITIES 2013: THE GREAT RECESSION AND ITS AFTERMATH
Abstract
This study addresses comprehensive federal, state and local public spending and services for people with developmental disabilities and their families across fiscal years 1977 through 2011. Out-of-home residential services were being provided to 614,184 persons across the states in fiscal year 2011. Information is provided for every state and the District of Columbia. An unusual three percent decline in state fiscal effort for I/DD services was noted in fiscal year 2011 across the states.
... The parental home is the predominant place of residence for adults with developmental disabilities/intellectual disabilities (DD/ID) (Heller et al., 2007). More than 75% of the adult population with DD/ID who live in the U.S. continue to have their basic needs provided by their parents (Braddock, 1999;Braddock et al., 2013;Byun et al., 2006;Fujiura, 1998;Larson et al., 2005;Williamson & Perkins, 2014). The prevalence of U.S. parents who continue to care for their adults with DD/ID is more than 3.5 million (Fox et al., 2015;Fujiura & Taylor, 2003). ...
... Additionally, an estimated 2.9 million adults with ID/DD live with a parent 55 or older (Byun et al., 2006). More than 25% of these parents are older than 60 (Braddock, 1999;Braddock et al., 2013;Fujiura, 1998;Fujiura & Park, 2003). The predominance of aging parents as the source of long-term care appears to result from discrimination and lack of appropriate housing, services, and support (American Association on Intellectual and Developmental Disabilities [AAIDD], 2013). ...
... Currently, individuals with DD/ID who had been on the waitlist for services can only receive such services if one of two things occurred within their state: (a) another individual with DD/ID who had received services died; or (b) state legislators increased the states' appropriations to the Medicaid Home and Community-Based Services (HCBS) program (Burke & Heller, 2016;Braddock et al., 2013). Each state's HCBS programs waive the nursing home setting as the only environment for receipt of these Medicaid supports and services. ...
The parental home is the predominant place of residence for adults with developmental disabilities/ intellectual disabilities (DD/ID) (Heller et al., 2007). More than 75% of the adult population with DD/ID, living in the US, continue to have their basic needs provided by parents (Williamson & Perkins, 2014). This is based on the estimated statistic of 1.0 to 1.58% of the entire U.S. adult population has a developmental disability (Anderson et al., 2019; Fox et al., 2015). About 2.9 million adults with DD/ID live with a parent 55 years (Byun et al, 2006), with more than 25% of these parents older than 60-years (Braddock et al., 2013). The predominance of aging parents as the source of long-term care seems to be the result of such factors as lack of appropriate housing, services, and supports, as well as discrimination in general (AAIDD, 2013). The study specific aims: 1. Describe the common meanings and shared practices of parenting an adult with DD/ID. 2. Understanding the challenges parents face in their current lives and the resources they use to meet those challenges. 3. Elucidate the practical advice they have for others who want to be supportive of the efforts of parenting an adult with DD/ID. The methodological approach is a Heideggerian hermeneutic approach using deWitt and Ploeg’s (2006) framework for rigor. Data was collected through interviews of 22 New Mexican parents caring for adult children with developmental/intellectual disabilities using semi-structured, open-ended questions and a demographic survey. The inclusion criteria included English-speaking birth parents living in the Southwest who parent an adult with DD/ID over the age of 18 years, who stills lives at home. Three overarching relational themes, a) parenting as unrelenting vigilance, b) parenting as enduring challenges, and c) parenting as a bridge between adult children with DD/ID and others, and the constitutive pattern, it is what it is… enduring the never-ending, provide a window into these parents’ lives. Because little is known about parenting adult children with DD/ID in New Mexico nationally, this research study revealed common meanings and shared practices of parenting adults with DD/ID which informs state and federal policy.
... Congregate living settings, especially when high levels of close-contact personal care support over multiple shift direct care workers are provided, are associated with poor outcomes from COVID-19, for people with 10 and without IDD. 41 For people with IDD, with estimates of around 13e20% of adults with IDD residing in congregate care settings, 42 this risk cannot be overstated. ...
Background
While there is ample evidence of increased COVID-19 mortality risk among people with intellectual and developmental disability (IDD), research has not documented whether this higher risk resulted in increased COVID-19 mortality burden in the US or whether comorbidity patterns among COVID-19 deaths are similar or distinct for people with IDD.
Objective
To determine the differences in COVID-19 mortality burden between decedents with and without IDD during the first year of the pandemic.
Methods
This study uses 2020 US death certificate data to compare COVID-19 mortality burden and comorbidity patterns among decedents with and without IDD.
Results
COVID-19 was the leading cause of death among decedents with IDD in 2020, compared to the 3rd leading cause among decedents without IDD. The proportion of deaths from COVID-19 was also higher for decedents with compared to without IDD. Comorbidities resulting from COVID-19 were similar among decedents with and without IDD, but there were some differences among reported pre-existing conditions, notably higher rates of hypothyroidism and seizures among decedents with IDD.
Conclusion
The COVID-19 mortality burden was greater for people with than without IDD during the first year of the pandemic. The continued practice of postmortem diagnostic overshadowing prevents analyzing whether this difference continues through today. Action is needed by the Centers for Disease Control and Prevention to mitigate this data inequity. Out of an abundance of caution, medical providers should carefully monitor symptoms among COVID-19 patients with IDD diagnosed with hypothyroidism and/or seizures.
... State of the States in Intellectual and Developmental Disabilities collects information on states' fiscal efforts and standardises state spending on IDD services per $1000 of state-wide personal income for comparison purposes. 37 39 We used the 2007-2016 State of the States in Intellectual and Developmental Disabilities data, adjusted to the 2017 dollar's value, to calculate average comparative state spending on IDD services in the 10 years prior to the death. The measure of fiscal support ranged from $1.11 to $9.79 in spending on IDD services per $1000 of state-wide personal income. ...
Objective
To investigate whether uncertainty surrounding the death is associated with the inaccurate reporting of intellectual disability as the underlying cause of death.
Design
National Vital Statistics System 2005–2017 US Multiple Cause-of-Death Mortality files.
Setting
USA.
Participants
Adults with an intellectual disability reported on their death certificate, aged 18 and over at the time of death. The study population included 26 555 adults who died in their state of residence between 1 January 2005 and 31 December 2017.
Primary outcome and measures
Decedents with intellectual disability reported on their death certificate were identified using the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision code for intellectual disability (F70–79). Bivariate analysis and multilevel logistic regression models were used to investigate whether individual-level and state-level characteristics indicative of increased uncertainty at the time of death were associated with the inaccurate reporting of intellectual disability as the underlying cause of death.
Results
Inaccurate reporting of intellectual disability as the underlying cause of death was associated with sociodemographic characteristics, death context characteristics and comorbidities indicative of an increased amount of uncertainty surrounding the death. Most striking were increased odds of having intellectual disability reported as the underlying cause of death for decedents who had a choking event (OR=14.7; 95% CI 12.9 to 16.6, p<0.001), an external cause of death associated with a high degree of uncertainty, reported on their death certificate.
Conclusion
It is imperative that medical personnel not let increased uncertainty lead to the inaccurate reporting of intellectual disability as the underlying cause of death as this practice obscures cause of death trends for this population. Instead, even in instances when increased uncertainty surrounds the death, certifiers should strive to accurately identify the disease or injury causing death, and report the disability in Part II of the death certificate.
... Several policies were enacted in the United States to address the longer lifespans and unmet needs of individuals with IDD in community settings. The Home and Community Based (HCBS) Medicaid services provide individuals with IDD the option of receiving necessary services in integrated community settings, as opposed to care through separate institutions (Braddock et al., 2013). The Americans with Disabilities Act (ADA: 1990) requires environmental supports to promote full community inclusion of people with disabilities. ...
This chapter details the evolution of research and practices, in community health informatics systems, with implementation for sustainable community health. Community health informatics utilizes internet applications, and associated health information delivery systems to improve community health information access. It also accomplishes the reduction of community health disparities, inequity, and social injustice. In this regard, this chapter provides a brief overview of the history around community health informatics. Followed by a detailed discussion of the current and potential implementation of health informatics systems for sustainable community health, grounded in community action theories. Community health informatics is an emerging interdisciplinary science. This chapter considers the role of disciplines related to community health informatics practices, for sustainable community health. In this regard, this chapter provides a brief overview of the history around community health informatics, followed by a detailed discussion of the current and potential implementation of health informatics systems for sustainable community health.
Intellectual disability (ID) persists from birth through adulthood and aging. Thus, the support provided to individuals with intellectual disabilities (IwID) in adulthood is essential to increase their self-determination and quality of life. This research aimed to determine how IwID may receive support for education, working life, accommodation, and leisure in adulthood in the Turkish context by increasing their and their families’ quality of life without socially discriminating against them. Qualitative data were collected in two stages, combining semi-structured interviews and the Delphi study technique. Results prompted the recommendation that a legal basis for transition-to-adulthood planning be established in Turkey for a functional adult service model. Next, a model with specific standards by which multidisciplinary experts analyse education, work, leisure, and housing alternatives for preadulthood and adulthood should be developed and coordinated by the Turkish Ministry of National Education and the Ministry of Family. Implications for the future are further discussed.
Objectives
Direct support professionals (DSPs) play a critical role in health-related outcomes for individuals with intellectual and developmental disabilities (IDD) who reside in congregate living settings. Large behavioral healthcare organizations often rely on staff to function as peer trainers for newly hired DSPs. Organizations should adopt empirically supported training techniques to prepare peer trainers for their role and develop systems to ensure ongoing integrity of the training system. The purpose of this program description is to summarize consultation activities that attempted to create these systems.
Methods
Staff members were trained to function as peer trainers, an assessment was conducted to determine the barriers to training in the natural environment, and a systems-level intervention informed by the assessment was implemented to improve peer trainer integrity.
Results
The assessment revealed peer trainers were often unaware when they were expected to train and did not receive feedback or programmed consequences for training newly hired DSPs. A systems-level intervention containing a prompt (reminder) about upcoming training and feedback plus a monetary incentive produced improvements in trainer integrity.
Conclusions
A systems-level intervention based on an assessment can improve peer trainer integrity. Ensuring peer trainer integrity increases the likelihood that newly hired DSPs will implement health-related protocols with individuals with IDD.
Sustainable health for people with intellectual and developmental disabilities (IDD) depends significantly on the service infrastructure they can access and the appropriateness, sufficiency, dependability, coordination, responsiveness, and inclusiveness of that infrastructure. Yet, there is little documentation on the health system supports for people with IDD important for their long-term wellbeing and inclusive living in their communities. In this chapter, we briefly discuss professional and legal definitions of IDD and provide an overview of the historical research and practices that have shaped community health issues for people with IDD. More importantly, we discuss the current and prospective wellness-oriented approaches for the sustainable health of people with IDD. We also consider cultural, professional, and legislative influences on the sustainable health of the community of people with IDD and the role of related disciplines services. Finally, we consider research and practice matters important to the community wellness and sustainable health of people with IDD.
Background
Although they will often serve as caregivers for their brothers–sisters with intellectual and developmental disabilities (IDD), adult siblings are rarely included in future planning.
Method
This study examined 495 American siblings who completed a web‐based questionnaire about themselves, their brother–sister with IDD, parents and whether their families completed 11 future planning activities.
Results
Although virtually all families completed some future planning, on average, families completed slightly over half of the 11 activities (75% completed eight or fewer). Families more frequently identified a successor to current caregivers and engaged in planning discussions with one another and with the brother–sister; least often, families completed a letter of intent or began securing residential placements. Future planning activities comprised three domains: (1) legal activities, (2) residential activities and (3) family discussions about the future. Variables relating to one or more domains included whether the brother–sister lived in or outside of family home; brother–sister independent living abilities; presence of an intellectual disability; parent caregiving ability; and current sibling caregiving and involvement with the brother–sister with IDD.
Conclusions
Although most families engage in some future planning, performance varies widely within and across future planning domains. Future planning involves different considerations and interventions depending on whether one is considering legal, residential or family discussions.
A unifying goal in care of cerebral palsy (CP) for the patient across the lifespan is the enhancement of quality of life. We begin by defining quality of life and illustrate how society’s notion of care of individuals with CP and other disabilities has changed and shaped modern practice today. Then, we address some of the key considerations important to enhancing the quality of life for individuals with CP throughout their lifespan. We discuss the importance of focusing on key transitional periods as opportunities for improving quality of life. We will discuss the impacts of school and mental health among other factors on the quality of life of those with CP. Finally, we highlight the role that palliative care can play throughout the lifespan to ensure that the focus remains on sustaining a good quality of life.
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