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Work stress, burnout, and social and personal resources among direct care workers.

18 Feb

No surprise, people who have jobs caring for people with intellectual and developmental disabilities face a lot of stress. A recent paper has looked into what causes and alleviates the stress for these workers.

Work stress, burnout, and social and personal resources among direct care workers.

Gray-Stanley JA, Muramatsu N.

School of Nursing and Health Studies, Northern Illinois University, 253 Wirtz Hall, DeKalb, IL 60115, United States.
Abstract

Work stress is endemic among direct care workers (DCWs) who serve people with intellectual and developmental disabilities. Social resources, such as work social support, and personal resources, such as an internal locus of control, may help DCWs perceive work overload and other work-related stressors as less threatening and galvanize them to cope more effectively to prevent burnout. However, little is known about what resources are effective for coping with what types of work stress. Thus, we examined how work stress and social and personal resources are associated with burnout for DCWs. We conducted a survey of DCWs (n=323) from five community-based organizations that provide residential, vocational, and personal care services for adults with intellectual and developmental disabilities. Participants completed a self-administered survey about their perceptions of work stress, work social support, locus of control, and burnout relative to their daily work routine. We conducted multiple regression analysis to test both the main and interaction effects of work stress and resources with respect to burnout. Work stress, specifically work overload, limited participation decision-making, and client disability care, was positively associated with burnout (p<.001). The association between work social support and burnout depended on the levels of work overload (p<.05), and the association between locus of control and burnout depended on the levels of work overload (p<.05) and participation in decision-making (p<.05). Whether work social support and locus of control make a difference depends on the kinds and the levels of work stressors. The findings underscore the importance of strong work-based social support networks and stress management resources for DCWs.

What adds to burnout? Work overload. Not being involved in decision making. Also, levels of client functioning, mobility, and intellectual abilities are a factor. If I read the paper correctly, levels of client functioning are a bigger factor than work overload.

Supervisor support and coworker support alleviated some of the stress and burnout.

The study concludes:

Policies or interventions developed as a result of this analysis might include strategies to foster work-based social support networks (i.e., team building efforts), as well as interventions to help workers develop personal stress management resources (Tierney, Quinlan, & Hastings, 2007). Successful protocols, once identified, can contribute to improved DCW job morale and ultimately better client care.

I don’t think stress and the sources of stress come as any great surprise. However, the more information available to make notions into supported facts, the better. If this can help caregivers and caregiver organizations support in reducing workload and adding methods to alleviate stress, so much the better for all. Especially the clients.

Irony and fear

17 Feb

I tried to stay away. Honestly. I’ve had enough of Andrew Wakefield for a long time. But a news story came out with two paragraphs that I couldn’t let go.

From DallasNews.com is an article “Some parents embrace discredited researcher whose studies link autism to vaccinations”. In it, Andrew Wakefield is quoted as saying:

“The tragedy is that it’s taking attention away from the real issues of how to help these poor children,” the 54-year-old surgeon said in
an interview Friday.

How much time has been wasted by parents and researchers in the MMR story?

That’s the irony. Now the fear.

Today, Wakefield, who hopes to open an Austin residential facility for autistic adults, said he regrets having to spend so much time
defending his 13-year-old study.

OK, I don’t really fear this as (a) I doubt it will come to pass and (b) I doubt my kid will end up in Austin.

So many thoughts go through my head thinking about Andrew Wakefield running programs for autistic adults. I seriously am at a loss for how to put those thoughts into words.

Autistic young adults missing out on much-needed services

9 Feb

Prof. Paul Shattuck, of Washington University in Saint Louis, is one of those people I greatly admire. He has repeatedly taken on studies of groups who are often overlooked in the majority of studies.

In a just release paper, Prof. Shattuck has studied what happens to young autistic adults as they transition out of high school. Sadly, about 40% stop receiving services post high school. Levels of services for speech therapy, mental health, medical diagnostics and case management all dropped notably after high school.

Low income and African American young adults were much more likely to not receive services.

Shattuck also found that the odds of not receiving any services were more than three times higher for African-American young adults compared with white young adults and more than five times higher for those with incomes of $25,000 or less relative to those with incomes over $75,000.

Rather than summarize this work here, let me present the news release. Follow the link for a video press release with Prof. Shattuck.

What happens to young adults with autism spectrum disorders (ASDs) once they graduate high school and are no longer entitled to services?

“National, state and local policy makers have been working hard to meet the needs of the growing numbers of young children identified as having an ASD,” says Paul Shattuck, PhD, professor at the Brown School at Washington University in St. Louis. “However, there has been no effort of a corresponding magnitude to plan for ensuring continuity of supports and services as these children age into adulthood.”

In a first-of-its-kind study, Shattuck looked at rates of service use among young adults with an ASD during their first few years after leaving high school. He found that 39.1 percent of these youths received no speech therapy, mental health, medical diagnostics or case management services.

Shattuck also found that the odds of not receiving any services were more than three times higher for African-American young adults compared with white young adults and more than five times higher for those with incomes of $25,000 or less relative to those with incomes over $75,000.

In his study, published in the current issue of the Archives of Pediatric and Adolescent Medicine, Shattuck looked at medical, mental health, speech therapy and case management services.

He found that overall rates of service use were 23.5 percent for medical services, 35 percent for mental health services, 41.9 percent for case management and 9.1 percent for speech therapy.

This compares with service use while in high school: 46.2 percent received mental health services, 46.9 percent had medical services, 74.6 percent were getting speech therapy and 63.6 percent had a case manager.

Shattuck says that the years immediately following the age at which students typically exit from high school are pivotal for all youths.

“A positive transition creates a solid foundation for an adaptive adult life course and a negative transition can set the stage for a pathway fraught with developmental, health and social difficulties,” he says.

“Youths with ASDs are especially vulnerable during this period because of their challenges with communication and social interaction, greater reliance on others for aid and high rates of health and mental health problems.”

Shattuck notes that there is a dearth of nationally representative data on the prevalence and correlates of service use among young adults with ASDs.

“Basic descriptive data on the prevalence and patterns of service use are necessary for planning by policy makers and administrators,” Shattuck says. “Knowledge of service use can help identify underserved populations and plan targeted services.

“Estimates of service use and correlates will help clinicians, service providers and family members be more informed and better prepared as they try to help teens with ASDs navigate the transition from adolescence to young adulthood,” he says.

Data for this report came from the National Longitudinal Transition Study 2 (NLTS2), a 10-year study conducted from 2000-2010 by SRI International for the U.S. Department of Education that followed more than 11,000 youths enrolled in special education as they aged into adulthood.

The study included 920 youths enrolled in the special education autism category at the start of data collection in May 2001.

The study’s co-authors are Mary Wagner, PhD, principal scientist in the Center for Education and Human Services at SRI International, and Sarah Narendorf, Paul Sterzing and Melissa Hensley of Washington University in St. Louis.

Prof. Paul Shattuck discussing his paper on lack of services for young autistic adults

9 Feb

I recently posted the press release for Prof. Shattuck’s latest paper. At the time, the video was only on his university’s webpage. Now that the video has been posted to YouTube, I can embed it and you can hear Prof. Shattuck telling you about the important points himself:

I apologize that there do not appear to be an option for subtitles.

Nova Scotia man receives apology for seclusion

27 Jan

In Family gets apology after autistic man confined in room for weeks, The Star reports:

A Nova Scotia special care home apologized to the mother of a 20-year-old autistic man who said her son was locked for periods of time over 15 days in a room without a bathroom.

The unidentified man’s confinement at the Braemore Home in Sydney was broken by exercise periods and meals, the provincial government has said. But at times, his mother and staff at the home said, he had to urinate in the room when he couldn’t leave to use a bathroom.

He was watched via video camera and was unable to turn the light off in his own room.

The story makes me see red, quite frankly. But, the man’s grandmother has accepted the apology and, we hope, the facility will change the

The young man’s grandmother said she would accept the apology “as long as it never happens again and they educate their workers about autism.”

“They (residents) are not animals, they are people,” she said. “Treat them with respect. What they did to him was not respectful.”

She said the apology comes late considering the incident was formally determined by provincial investigators to be a case of abuse in November.

The explanation offered is a lack of training:

The union said in a news release its members haven’t received training on how to deal with clients with autism and other special needs.

“There are clients coming into this facility with increasingly complex mental health issues such as autism and staff are receiving virtually no training on how to deal with these residents,” said Kathy MacLeod, the national representative for the CUPE local.

Braemore home lists as its mission:

Our mission is to provide quality programs and services for persons with disabilities. We are committed to supportive living, learning and working environments that promote independence, personal growth, health and well-being.

and under programs, states:

Braemore Home provides an array of integrated, evidence-based programs and services that promote and support the well being of persons with an array of complex disabilities including mild to profound intellectual impaiment[sic], physical disabilities, acquired brain injury, chronic mental illness, and dual diagnosis.

I find it hard to understand how they could not be prepared for an autistic adult. I don’t understand what level of training is required to understand that placing a human in a room without access to toilet, without access to turning off the light, is inappropriate.

More like you than not

25 Jan

Newsweek has a piece, Autism Finds Its Voice, which discusses a documentary about autistic adults, Tracy Thresher and Larry Bissonnette, and their travels and advocacy (which are combined for this film).

In the documentary Wretches & Jabberers, Tracy Thresher and his friend Larry Bissonnette, who is also autistic, travel from Vermont to Sri Lanka, Japan, and Finland to meet with other autistic adults. Both men grew up not speaking: Larry spent his childhood in institutions, while Tracy attended special-education classes where he passed his days doing puzzles. As adults they learned to type and acquired some verbal abilities. Today they are advocates for their condition, speaking (with the aid of their keyboards and assistants) at conferences about the myths and realities of autism. The goal of the tour, Tracy types in the film, is to “make a difference in the lives of people who can’t talk but are intelligent.”

http://c.brightcove.com/services/viewer/federated_f8/271557391

A short, related piece in Newsweek, And if Autism Were a Song, It Might Sound Like This, discusses the music used in the movie.

The music for Wretches & Jabberers was written by composer and musician J. Ralph, who scored the Academy Award–winning documentaries The Cove and Man on Wire. After watching the film, Ralph asked his musician friends to collaborate on the soundtrack. The catch was they couldn’t hear the songs first. Ralph wanted to capture the musicians discovering the music in the same way the subjects of the film discover language as they learn to type and communicate. Several of the songs borrow the phrases of the film’s subjects for their lyrics.

This piece ends with the positive note:

“I have friends that are on the spectrum, but for me this film is about basic human rights.” Including the right to be heard, even when the process is killingly hard.

I hope the film lives up to the message.

The tour so far for the movie is listed here, with more video clips here (which I’ll probably embed soon in a new post, but go look anyway).

Proposed California budget includes big cut for developmental services

24 Jan

In Governor Brown Proposes Massive Cuts to Social Safety Net, Marty Omoto of the California Disability Community Action Network writes:

$750 Million Reduction For Developmental Services

The Governor’s proposal for a $750 million reduction in state general fund spending for developmental services includes the 21 non-profit regional centers.

The bulk of that cut will most likely come from the 21 non-profit regional centers who coordinate community-based services and supports to over 240,000 children and adults with developmental disabilities. The regional centers contracted under the Department of Developmental Services (DDS) also coordinate the state’s early intervention program – called Early Start – that serves over 25,000 infants.

The proposed $750 million reduction does not include any lost federal matching funds which would like push the total reduction in spending in developmental services to close to $1 billion (all funds). This reduction is on top of 2009’s permanent and on-going $500 million reduction (including federal funds lost) in developmental services (the bulk of it impacting regional center funded services).

The $750 million reduction in State general fund spending proposed by the Governor would include the continuation for at least another year of the existing 4.25% reduction in payments to most regional center providers and to regional center operations which was scheduled to end as of June 30, 2011. That reduction would, under the Governor’s proposal, continue at least through June 30, 2012 – though the savings or reduction amount actually is permanent.

The reduction also would be achieved through several unspecified measures, including imposing new accountability and transparency measures; and implementation of a statewide purchase of services standards – first attempted in 2002 by Governor Gray Davis.

Many readers here will know of the Regional Centers as the source of data used by many to track autism “rates” over time. The Regional Centers (RC) are California’s method of administering support services to developmentally disabled residents. Each RC covers a large territory and is responsible for purchasing services from private vendors. This method would be in place of a system where the state employs the administrators and the service providers directly.

That said, the recent budget proposal includes $750,000,000 in cuts for services for the developmentally disabled. This will incur an estimated $250M in lost matching funds and is in addition to previous cuts already enacted.

Take the numbers and do the math, using just the $750M amount as a start. Use 265,000 people served by the CDDS. That’s about $2,800 per person. These are not small cuts.

And there is no end in site to the economic woes of the State.

Advancing paternal age and risk of autism

2 Dec

This isn’t the first study to look at paternal age as a possible risk factor for autism but it is, I believe, the first meta-analysis of the subject. The conclusions of the study were:

Based on data from a birth cohort, a family-based study and a meta-analysis, we provide the strongest and most consistent evidence available that advancing paternal age at the time of birth of offspring increases the risk of autism. De novo germline mutations, epigenetic alterations and life course toxic exposure may partly explain the observed association. The evidence is substantial enough to justify a search for the underlying mechanisms in both human and animal models

An interesting conclusion for a few reasons. First and foremost the idea of paternal age being a definite risk factor for autism. Secondly the authors don’t shy away from the idea that ‘life course toxic exposure’ may explain the association. Its not exactly a new observation amongst science (despite what some observers think) but its good to see it placed so clearly amongst the other clear risk factors.

There will be those, I predict, who will have a go at this study for somehow ‘blaming’ fathers/parents. It has happened in the past and will no doubt have the same effect on those who’ll attack this study for their own reasons.

Another example of misdiagnosed autistic adults

2 Dec

I am very bothered by the strong possibility that a there exists a large group of autistic adults who are either undiagnosed or misdiagnosed. Demonstrations of this come up over and over in the research literature. Such is the case with Missed diagnosis of autism in an Australian Indigenous psychiatric population, which came out on Pubmed today.

This recent example is from a very specific group: Indigenous Australians hospitalized with schizophrenia diagnoses. This particular group was 215 patients. Of this group, 14 were selected (I haven’t read the paper so I don’t know how this subgroup was selected). Out of that particular subgroup, 13 were “considered” to have a diagnosis of autism.

Missed diagnosis of autism in an Australian Indigenous psychiatric population.

Roy M, Balaratnasingam S.

South Birmingham Primary Care Trust, Birmingham, UK.
Abstract

Objective: The aim of this paper is to review the diagnosis among adult Indigenous patients from the Kimberley region of Western Australia who had an existing diagnosis of schizophrenia. A visit from a psychiatrist specializing in intellectual disability provided the opportunity for conducting psychiatric assessments from a developmental perspective. Method: Selected patients with schizophrenia were assessed from an intellectual disability perspective from an active case load of 215 patients. Result: Thirteen out of 14 selected patients were considered to have a diagnosis of autism when a developmental history was undertaken. Case studies are presented to illustrate the overlap in symptoms and potential for the diagnosis of autism to be missed. Conclusions: Autism spectrum disorders may be missed in Indigenous population groups. This has implications for treatment and service provision. Clinicians need to be mindful of the diagnostic possibility that an autism spectrum disorder might be masquerading as schizophrenia in the context of intellectual disability and atypical presentation.

Misdiagnosis of autistics happens. It happens in the U.S., the U.K. and elsewhere. Again, this really bothers me. It bothers me that there seems to be little focus on this issue by autism advocacy organizations, even by the research funding agencies.

Autism researchers want your input: Autism and the Internet at UCLA

18 Sep

Researchers at UCLA are interested in your input on a survey of Autism and the Internet. The study has IRB approval and the description from their site is below:

You are asked by Dr. Patricia Greenfield, of the Department of Psychology at the University of California, Los Angeles, if you would like to participate in this anonymous internet survey comparing how people with and without autism use the internet. Your participation in this study is voluntary and you may stop doing the survey at any point in time.

Purpose of the Research: The goal of this study is to see if the internet helps autistic and non-autistic people make friends and/or learn about their hobbies. We would also like to know if different ways of seeing the world, regardless of diagnosis, relate to different ways of using the internet.

Outline of Procedures: If you would like to participate in this study, please select the box at the end of this consent form titled “I consent to participate in the survey Autism and the Internet”. If you would not like to participate, select the box titled “I do not consent to participate in the survey Autism and the Internet.” If you consent to participate, the survey will appear on your computer screen. If you ever decide that you no longer want to complete the survey, you are free to stop taking the survey at any point in time. Your responses to the survey will remain anonymous. The survey will take between 15 minutes and one hour to complete.

Foreseeable Discomforts: Your may feel uncomfortable emotions when thinking about questions on the survey. If the survey questions make you feel uncomfortable, you are free to stop taking the survey at any point in time. The questions are designed to be as clear as possible so it is likely that you will not experience emotional discomfort as a result of the survey.

Potential Benefit to Participants and Society: Possible benefits of the study to society are that the knowledge gained may help people evaluate whether the internet helps autistic and non-autistic people to form connections and learn about their passions. This information may be useful in designing treatments to help autistic people communicate more effectively or in recognizing when such treatments are unnecessary because the autistic people are already satisfied with how they use the internet to communicate and learn.

Your participation would be anonymous and greatly appreciated. If you have the time and inclination, consider offering your experience to help out these researchers. The survey can be found here.

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