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Social-sexual education in adolescents with behavioral neurogenetic syndromes

30 Mar

A recent paper abstract I read brought up a very important topic which I don’t see discussed much: sex education for adolescents with developmental disabilities. I don’t know how good the paper itself is, but I agree with the conclusion: “Social and sexual education programs are of the utmost importance for adolescents with neurogenetic developmental disabilities. ” On one level I don’t want to think about sex and my kid. But I also have run into a belief that sex isn’t a topic to consider for people with developmental disability and autistics in particular. Perhaps I am naive, but I don’t see this as a good approach. I think sexuality is too important a topic to leave unaddressed. The discussion is going on. Just rarely in the parent-oriented online world.

Isr J Psychiatry Relat Sci. 2010;47(2):118-24.
Social-sexual education in adolescents with behavioral neurogenetic syndromes.

Plaks M, Argaman R, Stawski M, Qwiat T, Polak D, Gothelf D.
The Behavioral Neurogenetics Center, Feinberg Department of Child Psychiatry, Schneider Children’s Medical Center of Israel, Petah Tikwa, Israel.

Abstract
BACKGROUND: Adolescents with developmental disabilities have unmet needs in their sexual and social knowledge and skills. We conducted a sexual social group intervention in adolescents with neurogenetic syndromes, mainly with Williams and velocardiofacial syndromes and their parents.
METHOD: Ten adolescents with neurogenetic syndromes and 14 parents participated in a Social Sexual Group Education Program. The program was delivered in 10 biweekly sessions to the adolescents and their parents separately.
RESULTS: The focus of psychoeducation in both groups was the adolescents’ self-identification, acceptance of the developmental disability, independence, establishment of friendship and intimate relationship, sexual knowledge and sexual development, and safety skills. Change in independent activities of adolescents and in their concept of “Friend” was measured.
CONCLUSIONS: Social and sexual education programs are of the utmost importance for adolescents with neurogenetic developmental disabilities. These programs should start already before adolescence and follow the children into young adulthood.

Bullying Revisited: Retarded?

4 Mar

There’s a good article on the Huffington Post that I want to draw some attention to. Tim Shriver Jr. and Soeren Palumbo wrote a piece, Bullying Revisited: Retarded?. They discuss the
Spread the Word to End the Word campaign by Special Olympics (and supported by about 200 more organizations).

I know it is pretty much preaching to the choir here talking about the harmful message in words like “retarded” as it is commonly used today. But, perhaps the choir could go over there and show some support. I’d like to see the Huffington Post host more pieces like this than, well, some of the material they host.

March Is Developmental Disabilities Awareness Month

3 Mar

For the past few years, each April gets a lot of attention for Autism Awareness Month. All well and good but are you aware that Developmental Disabilities Awareness Month has already started?

A message from The Arc:

March Is Our Month

Thanks to the advocacy efforts of The Arc in the 1980s, President Ronald Reagan officially declared March to be Developmental Disabilities Awareness Month in 1987. For nearly a quarter of a century, The Arc and its network of 700+ chapters across the country have fostered respect and access for individuals with intellectual and developmental disabilities (i/DD). We have made tremendous progress in promoting and protecting the rights of people with I/DD and creating opportunities for them to live, learn and work as valued members of their communities.

However, it’s time more people became aware of the challenges faced by more than 7 million Americans and their families as they strive to be fully included in society. Join us during March to help raise awareness. Volunteer at a local chapter of The Arc. Donate. Or simply speak up and help enlighten those around you. Find out more about I/DD and what you can do at www.thearc.org today. Watch our blog, Facebook page and Twitter profile for messages all month about things you can do as an individual to help raise awareness then spread the word…share and retweet and let’s get everyone talking about I/DD during March.

The Arc Action Alert – Do You Want “Congregate Care”?

25 Feb

The Arc sends out periodic Action Alerts. I just got this one in my email inbox. Do you think the government should go back to segregated living and institutions for people with intellectual and developmental disabilities? Now is your chance to add your comments and be heard.

Do You Want “Congregate Care”?
Then now is the time to counter calls for institutions and other segregated settings

institution for people with intellectual and developmental disabilities. The Administration on Developmental Disabilities (ADD) has just extended the deadline for submitting testimony for its national listening sessions. And people who support institutions are wasting no time in letting ADD know what they want. In fact, VOR is calling on its membership to “Tell ADD to support Choice” in residential settings for people with intellectual and developmental disabilities.

Please take a minute to provide your comments to ADD and let them know that segregated, congregate living for people with disabilities should NOT be a choice. We know all too well that abuse, neglect and other forms of denigration are far more likely to occur in large congregate settings. Integrated, community based housing is the only policy the federal government should be supporting.

It’s critical that ADD hear from many people with intellectual and developmental disabilities or their family members. Please submit your comments before March 4 at:
http://www.envision2010.net/comment_submit.php

Thank you in advance for your advocacy.

Motor vehicle accidents, suicides, and assaults in epilepsy: A population-based study

24 Feb

I seem to be in epidemiology mode today, so I decided to post this abstract that I found interesting. Are people with epilepsy more prone to car accidents or suicide? Apparently not. Are they more prone to being assaulted? Assaulted as in resulting in injury? Yes.

I am unclear how many factors they were testing, so it is difficult to know how much these could be by chance.

Motor vehicle accidents, suicides, and assaults in epilepsy: A population-based study.

Kwon C, Liu M, Quan H, Thoo V, Wiebe S, Jetté N.

From the Departments of Clinical Neurosciences (C.K., S.W., N.J.) and Community Health Sciences (H.Q.), University of Calgary, Calgary; Alberta Health Services (M.L.), Calgary; Dalhousie University (V.T.), Halifax, Canada; and Harvard School of Public Health (C.K.), Boston, MA.
Abstract

BACKGROUND: The goal of our study was to compare the incidence of motor vehicle accidents (MVA), attempted or completed suicides, and injuries inflicted by others between individuals with and without epilepsy.

METHODS: Individuals with and without epilepsy were identified using linked administrative databases between 1996 and 2003 in a Canadian health region with a 1.4 million population. We used a validated epilepsy case definition: anyone who had 2 physician claims, one hospitalization, or one emergency room visit coded with an International Classification of Diseases (ICD)-9-CM or ICD-10 epilepsy code any time during a 2-year period. Four subjects without epilepsy were matched to one patient with epilepsy by age (within 1 year) and sex. The incidence of MVAs, attempted or completed suicides, and inflicted injuries was assessed in 2003-2004. Outcomes were adjusted using the Elixhauser comorbidity index.

RESULTS: A total of 10,240 individuals with epilepsy and 40,960 individuals without epilepsy were identified. Mean age was 39.0 ± 21.3 years (range 0.12-99.4) and 48.5% were female. One-year odds ratios before and after adjustment for comorbidity were 1.83 (95% confidence interval [CI] 1.33-2.54) and 1.38 (95% CI 0.97-1.96) for MVAs, 4.32 (95% CI 2.79-6.69) and 1.32 (95% CI 0.81-2.15) for attempted or completed suicides, and 3.54 (95% CI 2.66-4.72) and 1.46 (95% CI 1.04-2.03) for injuries inflicted by others.

CONCLUSION: In this cohort-controlled population-based study, once important medical and psychiatric comorbidities were adjusted for, people with epilepsy were not more likely to attempt suicide or experience MVAs, but were still more likely to be assaulted compared to those without epilepsy.

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.

Obama’s State of the Union Address 2011

26 Jan

Last night Barack Obama gave the annual “State of the Union” address to the American people. I have to admit, I missed it, so I waited for a transcript to come out. I searched for “autism”. I searched for “disability”. I found nothing. I searched for “education”. There was much on education, but nothing about special education. OK, there wasn’t anything on autism, disability or special education in 2010’s speech either. I don’t think it was in 2009 either.

Aside from my own interests, why would I look to these speeches for mention of autism or disability or special education? It’s because I remember the promises made on the campaign trail. I remember the disability plan that the Obama/Biden campaign had then.

I remember the promise to fully fund the federal government’s commitment to special education:

Fully Funding the Individuals with Disabilities Education Act: Barack Obama has been a strong and consistent advocate for fully funding the Individuals with Disabilities Education Act (IDEA). Congress promised to shoulder 40 percent of each state’s “excess cost” of educating children with disabilities, but it has never lived up to this obligation. Currently, the federal government provides less than half of the promised funding (17 percent). Children are being shortchanged, and their parents are forced to fight with cash-strapped school districts to get the free and appropriate education the IDEA promises their children. Fully funding IDEA will provide students with disabilities the public education they have a right to, and school districts will be able to provide services without cutting into their general education budgets. In addition to fully funding IDEA, Barack Obama and Joe Biden will ensure effective implementation and enforcement of the Act.

IDEA is still not fully funded. The economic stimulus funds did give a one-year boost to IDEA funding (not 100% funded, but a lot more than usual). No long term commitment to keep higher levels has come through.

I remember autism being prominent in the plan:

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. Barack Obama and Joe Biden believe we need to research treatments and search for the causes of ASD. Obama has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Barack Obama and Joe Biden believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. They will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. They will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program – a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both children and adults with ASD.

More money has gone into research, especially a big one-year boost from the economic stimulus funds.

The Obama/Biden campaign had an autism specific agenda document, which included an individual to oversee federal autism efforts:

Appoint Federal ASD Coordinator to Oversee All Federal ASD Efforts: Barack Obama and Joe Biden will ensure all federal ASD activities occur in an efficient manner that prioritizes both research and supports for families affected by ASD. They will appoint a Federal ASD Coordinator to oversee federal ASD research and federal efforts to improve awareness of ASD and improve the training of medical professionals to identify and treat ASD. By establishing one top-level point person to coordinate ASD efforts in the White House, they will ensure that ASD receives the recognition and priority it deserves in the federal government. The Federal ASD Coordinator will also be tasked with eliminating bureaucratic obstacles that may be delaying implementation of important ASD measures and ensuring that all federal ASD dollars are being spent in a manner that prioritizes results. The Coordinator will work with state task forces on ASD to ensure effective communication and collaboration among federal, state, and local agencies.

I remember these things. I bet a lot of readers here do too. We remember. We vote.

Festivus isn’t over…

3 Jan

…until someone pins me.

Yes, in my listing of seasonal Holidays I neglected Festivus. (Festivus is a holiday invented by the family of one of the writers of the show Seinfeld and made known through that show). Festivus doesn’t end until the someone pins the host in the “feats of strength”. For the moment I’ll abscond with Kev’s rightful position as host of LeftBrainRightBrain and claim that since I have not been pinned, Festivus is still ongoing, I will use this opportunity to express another Festivus tradition: the airing of grievances.

The U.S. federal government was a major disappointment last year. There are many reasons, but today I will focus on the failure (once again) to fulfill their commitment to the Individuals with Disability Education Act (IDEA).

Barack Obama set out this promise during his campaign:

Fully Funding the Individuals with Disabilities Education Act: Barack Obama has been a strong and consistent advocate for fully funding the Individuals with Disabilities Education Act (IDEA). Congress promised to shoulder 40 percent of each state’s “excess cost” of educating children with disabilities, but it has never lived up to this obligation. Currently, the federal government provides less than half of the promised funding (17 percent). Children are being shortchanged, and their parents are forced to fight with cash-strapped school districts to get the free and appropriate education the IDEA promises their children. Fully funding IDEA will provide students with disabilities the public education they have a right to, and school districts will be able to provide services without cutting into their general education budgets. In addition to fully funding IDEA Barack Obama and Joe Biden will ensure effective implementation and enforcement of the Act.

Mr. Obama provided a big boost to IDEA funding, for one year. This was in the form of funding from the economic stimulus plan. Unfortunately, since this was a one-time-only boost, schools were unable to hire additional people or otherwise spend the money in ways that would require long-term investment.

In 35 years, the Federal government has never lived up to their promised contribution to IDEA. Fully funding the federal government’s commitment to special education is long overdue. Yes, it is focused on school age children and doesn’t apply to autistic adults. But, it would make a big difference especially in these tough economic times when districts are faced with big budget problems.

End of the R-word?

12 Oct

The following is a press release from The Arc of the United States. It discusses a new law which will change the wording in many governmental uses from “mental retardation” to “intellectual disability”

E-Newsletter Issue Date: Monday, October 11, 2010

On Friday afternoon, President Barack Obama put his pen to work signing the Twenty-First Century Communications and Video Accessibility Act of 2010 into law, delivering brief remarks on the impact of the law on people with disabilities and celebrating Rosa’s Law. The law, which was enacted by the President on Tuesday, substitutes the term “intellectual disabilities” for “mental retardation” in many federal laws.

Self-advocates William Washington (The Arc’s national office receptionist), Jill Egle (Co-Executive Director, The Arc of Northern Virginia) and Jeremy Jacobson (son of The Arc’s Chief Development and Marketing Officer Trudy Jacobson) joined Paul Marchand, Director of the Disability Policy Collaboration to represent the intellectual and developmental disability community whose advocacy resulted in this bill.

Nine-year-old Rosa Marcellino, for whom the law was named was in attendance with her family and received a hug from the President. Also in attendance were the bill’s sponsors, key policy leaders and musician Stevie Wonder.

Rosa’s Law was passed by the Senate earlier this year and passed the House in September. Self-advocates and The Arc have led the effort to get the bill enacted as part of a nationwide effort to remove the stigma of the “r-word.” The majority of states have altered their terminology by replacing the term “mental retardation” with “intellectual disability” in state laws and in the names of state agencies that serve this population.

Changes in terminology are another stepping stone toward realizing a more inclusive society. The Arc was instrumental in the passage of Rosa’s Law by galvanizing support across the nation and through vigorous advocacy. “We have achieved another historic milestone in our movement. We understand that language plays a crucial role in how people with intellectual disabilities are perceived and treated in society. Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights,” said Peter V. Berns, CEO of The Arc.

The Twenty-First Century Communications and Video Accessibility Act increases accessibility for people with sensory disabilities to modern communications, such as internet access over smart phones. The Arc also advocated strongly for this legislation and celebrates its enactment.

A reminder for neurodiversity

2 Sep

Its been awhile since I blogged about neurodiversity and why it matters to me as a concept. Two recent events in my own life has made me more aware of that than usual.

In the first event, which concerns me directly, I have had to have a change in the medication I take that helps me regulate the manic depression (bipolar) I am diagnosed with. Nobody knows why I need to adjust my medication, only that it needs adjusting and so I shall shortly have Lamotrigine added to the medication regime I have to take.

How does that remind me about neurodiversity? It reminds me that the basic tenets of neurodiversity – respect for the individual differences those with different neurological makeups have – are my best way of being able to move forward in this world. More on this later.

In the second event, which occurred to some of my new family two days ago, myself, my partner and her two daughters – of whom the eldest (she is 4) is autistic – were shopping. Lily began to have a meltdown, a not unknown event in supermarkets for her and one for which we have a carefully worked out strategy. However, this time our strategy was rudely interrupted when a young woman began to shake her head, gawp openly at Lily and make tutting noises. She obviously felt Lily was a naughty child, rather than an autie child.

My partner and I decided that we had had enough of people judging Lily and so remonstrated with this woman. We both explained that Lily was autistic and unable at the age of four to regulate herself in high impact environments but we had to eat and anyway why should we exclude Lily from coming out with us as a family?

The woman waved her hand at us both in a casual dismissal and said we weren’t ‘controlling’ her properly. I smiled through gritted teeth and asked her what she knew about autism. She refused to answer. I asked her again and she walked off with another casual wave of dismissal. My partner’s by now angry shout of ‘shes autistic and a little girl, she can’t help herself’ following her down the aisle.

Of course, this isn’t the first time either one of us have been exposed to such ignorance and I doubt it will be the last. I’m also sure that many parents and autistic people reading this will be familiar with ‘the look’ that can come from such ignorant people who believe they have a divine right to judge others. But it again reminded me of neurodiversity and why I believe in its most basic tenet.

My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up.

People like the woman in Sainsburys are the ‘anti-neurodiversity’. They believe we can and should judge immediately, based on no other evidence than what we see and hear right in front of us. To me, neurodiversity should sit and think, consider the possibilities and act accordingly, based on a desire to help society in the belief that society should do the same for us.

By specifying a desire to include those with differing neurological disorders/disabilities/differences, neurodiversity helps me to feel secure in the world. It also means that I can feel secure in the world my children will inherit.