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.

David Cameron intends to cripple those with disabilities

3 Mar

Today I received an email from NAS stating:

The Government has announced a one billion pound cut to Disability Living Allowance (DLA). Next week in parliament, MPs will debate plans for a new system which could make it much harder for adults with autism to claim DLA…

For those not in the know DLA is a state benefit given to children (or their parents depending on age) and adults who have an established need based on circumstances arising from their disability. For example, my child receives DLA because xe cannot care for xyrself and needs extra help that must be accounted for. It is not a huge amount of money but for people with a disability, every single penny counts.

NAS’ email continued:

We need you to ask your MP to help protect this crucial benefit for people with autism.

Please also visit the NAS Who Benefits page to actively support the initiative and make David Cameron’s coalition led gvmt wake up to the reality that for autistic adults, DLA is a lifeline to not just personal independence but also simple everyday living.

IMFAR Conference 2011

2 Mar

IMFAR, the International Meeting for Autism Research, is held every year. It is presented by INSAR, the International Society for Autism Research. IMFAR is the largest autism conference held, with hundreds of presentations of new research results.

IMFAR 2011 will be held in San Diego, California, May 12-14, at the Manchester Grand Hyatt.

The program is not out yet, as they are still working on culling the over 1,000 abstracts submitted:

IMFAR 2011 Programming is Underway
Over 1,000 abstracts were submitted this year for IMFAR 2011. The Program Committee is currently reviewing abstracts and panel submissions. Abstract acceptance notifications are scheduled to be sent via e-mail by March 4

Keynote speakers have been announced:

Eric Courchesne, Ph.D

Eric Courchesne is Professor of Neurosciences in the School of Medicine at the University of California San Diego (UCSD) and Director of the NIH-funded UCSD Autism Center of Excellence. He is an internationally recognized expert on brain structural and functional abnormalities associated with autism. His Autism Center of Excellence aims to identify biobehavior markers of autism that will allow for earlier diagnosis and treatment by integrating behavioral, developmental, genetic, neuroanatomic and neurofunctional findings. Current ACE Center research includes MRI studies have identified structures that are abnormal at infancy in autism and elucidated patterns of abnormal growth from infancy through adulthood. Current functional brain imaging techniques seek to establish links between autistic symptoms in infants and toddlers and the brain sites responsible for them. Studies of brain tissue have discovered novel gene expression profiles and cellular defects in the frontal cortex at the youngest ages in autism and have additionally characterized how these abnormalities change with age from early childhood and to adulthood. Dr. Courchesne’s studies have resulted in over 180 publications with an overall very high impact factor as determined by the ISI Web of Knowledge. His research has been published in Science, JAMA, Lancet and the New England Journal of Medicine and is supported through grants from NIMH, NINDS, NICHD, the Simons Foundation and Autism Speaks.

Ricardo Dolmetsch Ph.D.

Dr. Ricardo Dolmetsch is a faculty member in the Department of Neurobiology at Stanford University where he directs a laboratory that studies the underlying cellular and molecular basis of autism spectrum disorders (ASDs). He is a graduate of Brown University, received his graduate degree from Stanford and did his postdoctoral training at Harvard Medical School. His group has pioneered the use of adult stem cells to study the development of the brain and the mechanisms that lead to neurodevelopmental disease. He has received numerous awards for his work including the Society for Neuroscience Young Investigator Award in 2007 and the NIH Director’s Pioneer Award in 2008. He is the author of more than 30 scholarly publications and is the parent of a child with ASD.

Professor Annette Dionne Karmiloff-Smith

Annette Karmiloff-Smith was until 2003 Head of the Neurocognitive Development Unit at the Institute of Child Health in London where she ran a research team studying typical/atypical development and genotype/phenotype relations. She now occupies a Professorial Research Fellowship at the Birkbeck Centre for Brain and Cognitive Development, University of London. She has a “Doctorat en Psychologie Génétique et Expérimentale” from the University of Geneva, where she studied with the famous Swiss psychologist, Jean Piaget. She is the author of 7 books and of over 200 chapters and articles in scientific journals, as well as a series of booklets for parents on different aspects of foetal, infant and child development. Her research on neurodevelopmental syndromes focuses on identifying basic-level deficits in early infancy and their cascading effects over developmental time on the resulting cognitive phenotype.

All are excellent, but one stands out in my mind, just because I’ve read a lot of his work–
Eric Courchesne is one of the most published and most cited researchers in autism. He’s been working on brain structure (and other topics) for 20 years (earliest publication I see is from 1978). For publication geeks out there, his H-index is at least 59 (based on a quick search of his papers). For the 99.99% of people (or more) who have never heard of the H-index, I’ll just say, his publication record is damned impressive.

IMFAR is not cheap, at $475 for “early bird membership” for non-members. There is no reason to attend as a non-member. The price for a membership in INSAR is $100, and the conference fee for a member is $100 less than the non-member price.

IMFAR is a busy, scientific conference. Most talks are 15 minutes, including questions. This doesn’t leave much time for the speaker to give background information. Poster sessions will be large–many, many posters being shown at the same time. But just take a look at past conference programs. The amount of work presented is amazing.

I am waiting eagerly for the program to be announced. There is also a flurry of press releases during the conferences as the embargoes are lifted on research projects presented there. Yes, I get excited by new research and IMFAR is pretty much the most concentrated announcement of new research in the autism world each year.

2011 IACC Strategic Plan Includes New Focus on Interventions for Nonverbal People with ASD, Health Promotion Efforts, and Safety

1 Mar

IACC news alerts come out periodically. You can check the archive and/or sign up for the emails. The 2011 Strategic Plan came out yesterday. Coincident with that was a news announcement:

2011 IACC Strategic Plan Includes New Focus on Interventions for Nonverbal People with ASD, Health Promotion Efforts, and Safety

The Interagency Autism Coordinating Committee (IACC) has released its 2011 Strategic Plan for Autism Spectrum Disorder (ASD) Research, which is intended to provide a blueprint for future ASD research efforts. The Plan provides a set of research recommendations to guide federal autism research efforts and serves as a basis for partnerships with other agencies and private organizations involved in ASD research and services.

“Federal and private investment in autism research has increased markedly in the past two years,” said IACC Chairman and NIMH Director Dr. Thomas Insel. “At the same time, the IACC has heard from the community about the growing need for research and the importance of new areas for rigorous scientific study. This updated research Strategic Plan builds on recent discoveries and emerging opportunities to identify new areas where science can make a difference for individuals and families with ASD.”

Several new areas of focus have been identified in the 2011 Plan, including studies on the use and accessibility of Alternative and Augmentative Communication (AAC) tools for nonverbal individuals on the spectrum and studies of health promotion and the prevention of related health concerns such as obesity and mental health issues. In addition, in response to public concerns about the health and safety of children and adults with autism, the committee added new objectives related to understanding safety issues that may contribute to the increased risk of injury and premature death that has been reported in the literature.

In total, the IACC added 16 new objectives to the Plan during the update and added an addendum section to each chapter describing what has been learned over the past year, what gap areas have emerged, and what progress has been made in fulfilling the existing objectives. During the annual update of the Plan, which is required under the Combating Autism Act of 2006, the IACC considered input from ASD community, advocacy groups, research funding organizations, and the scientific community. Also incorporated was information from the IACC Portfolio Analysis of ASD Research Funding in 2009 (the most recent year for which there was complete funding data), the 2010 IACC Summary of Advances in ASD Research, the Request for Information (RFI) on the 2010 Plan, and the proceedings of the IACC Services Workshop held in November 2010.

In developing the 2011 Plan, the committee highlighted many successful collaborations that have been recently formed among member agencies and organizations. These collaborations included a joint conference held by the National Institute of Environmental Health Sciences (NIEHS) and Autism Speaks on autism and the environment; an information portal called AutismNOW supported by the Administration for Children and Families (ACF), in partnership with the Autistic Self-Advocacy Network (ASAN) and the Autism Society; and the Autism Informatics Consortium, which is designed to improve the utility and usability of informatics tools for ASD researchers and represents a collaboration between NIH, Autism Speaks, and the Simons Foundation. These public-private partnerships embody the spirit of collaboration described in the Plan’s Mission Statement and are critical to making progress toward understanding ASD and improving the lives of people on the spectrum, as well as those of their families.

US proposes $154M in new autism research projects

1 Mar

The Interagency Autism Coordinating Committee (IACC) is charged with creating the “Strategic Plan“. This document lays out research priorities for the US government to pursue in the upcoming years.

The full plan is available ether by html or pdf.

If you’ve watched IACC meetings, you know that a lot of time goes into word smithing. They work out the wording that will go into the document and convey the messages with the best balance of the various viewpoints represented by the committee. Not to belittle that effort, but when the rubber hits the road, what gets into the budget is what matters most to me.

With that in mind, I’ve summarized the new objectives (long-term and short-term) that were added in 2011.

I also went through and quickly summed up the new item budget amounts. Forgive me if I missed anything, but here is what I got. First as a brief summary:

Question 1: When Should I Be Concerned?:
2 new objectives. $9,635,000

Question 2: How Can I Understand What Is Happening?:
no new objectives. $0

Question 3: What Caused This To Happen And Can This Be Prevented?:
6 new objectives. $90,570,000

Question 4: Which Treatments and Interventions will Help?:
3 new objectives. $45,500,000

Question 5: Where Can I Turn for Services?: 3 new objectives.
$3,800,000

Question 6: What Does the Future Hold, Particularly for Adults?:
no new objectives. $0

Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?:
3 new objectives. $4,950,000

Total: 17 new objectives. $154,455,000

And as a more detailed summary:

Question 1: When Should I Be Concerned?
Aspirational Goal: Children at Risk for ASD Will Be Identified Through Reliable Methods Before ASD Behavioral Characteristics Fully Manifest.

New Short-Term Objectives:

2011 E. Conduct at least one study to determine the positive predictive value and clinical utility (e.g., prediction of co-occurring conditions, family planning) of chromosomal microarray genetic testing for detecting genetic diagnoses for ASD in a clinical setting by 2012. IACC Recommended Budget: $9,600,000 over 5 years.

2011 F. Convene a workshop to examine the ethical, legal, and social implications of ASD research by 2011. The workshop should define possible approaches for conducting future studies of ethical, legal, and social implications of ASD research, taking into consideration how these types of issues have been approached in related medical conditions.IACC Recommended Budget: $35,000 over 1 year.

New Long-Term Objectives: None.

Question 2: How Can I Understand What Is Happening?
Aspirational Goal: Discover How ASD Affects Development, Which Will Lead To Targeted And Personalized Interventions.

New Short-Term Objectives: none.

New Long-Term Objectives: None.

Question 3: What Caused This To Happen And Can This Be Prevented?
Aspirational Goal: Causes Of ASD Will Be Discovered That Inform Prognosis And Treatments And Lead To Prevention/Preemption Of The Challenges And Disabilities Of ASD.

New Short Term Objectives:

2011 F. Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” This link exits the Interagency Autism Coordinating Committee Web site as potential causes of ASD by 2012. IACC Recommended Budget: $56,000,000 over 2 years.

2011 G. Convene a workshop that explores the usefulness of bioinformatic approaches to identify environmental risks for ASD by 2011. IACC Recommended Budget: $35,000 over 1 year.

2011 H. Support at least three studies of special populations or use existing databases to inform our understanding of environmental risk factors for ASD in pregnancy and the early postnatal period by 2012. Such studies could include:

* Comparisons of populations differing in geography, gender, ethnic background, exposure history (e.g., prematurity, maternal infection, nutritional deficiencies, toxins), and migration patterns; and

* Comparisons of phenotype (e.g., cytokine profiles), in children with and without a history of autistic regression, adverse events following immunization (such as fever and seizures), and mitochondrial impairment. These studies may also include comparisons of phenotype between children with regressive ASD and their siblings.

Emphasis on environmental factors that influence prenatal and early postnatal development is particularly of high priority. Epidemiological studies should pay special attention to include racially and ethnically diverse populations. IACC Recommended Budget: $12,000,000 over 5 years.

2011 I. Support at least two studies that examine potential differences in the microbiome of individuals with ASD versus comparison groups by 2012. IACC Recommended Budget: $1,000,000 over 2 years.

2011 J. Support at least three studies that focus on the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes via epigenetic mechanisms to alter gene expression, by 2012. IACC Recommended Budget: $20,000,000 over 5 years.

2011 K. Support two studies and a workshop that facilitate the development of vertebrate and invertebrate model systems for the exploration of environmental risks and their interaction with gender and genetic susceptibilities for ASD by 2012. IACC Recommended Budget: $1,535,000 over 3 years.

New Long Term Objectives: None.

Question 4: Which Treatments and Interventions will Help?
Aspirational Goal: Interventions Will Be Developed That Are Effective For Reducing Both Core And Associated Symptoms, For Building Adaptive Skills, And For Maximizing Quality Of Life And Health For People With ASD.

New Short Term Objectives:

2011 G. Support at least five studies on interventions for nonverbal individuals with ASD by 2012. Such studies may include:

* Projects examining service-provision models that enhance access to augmentative and alternative communication (AAC) supports in both classroom and adult service-provision settings, such as residential service-provision and the impact of such access on quality of life, communication, and behavior;

* Studies of novel treatment approaches that facilitate communication skills in individuals who are nonverbal, including the components of effective AAC approaches for specific subpopulations of people with ASD; and

* Studies assessing access and use of AAC for children and adults with ASD who have limited or partially limited speech and the impact on functional outcomes and quality of life.

IACC Recommended Budget: $3,000,000 over 2 years.

2011 H. Support at least two studies that focus on research on health promotion and prevention of secondary conditions in people with ASD by 2012. Secondary conditions of interest include weight issues and obesity, injury, and co-occurring psychiatric and medical conditions. IACC Recommended Budget: $5,000,000 over 3 years.

New Long Term Objectives:

2011 D. Support at least five community-based studies that assess the effectiveness of interventions and services in broader community settings by 2015. Such studies may include comparative effectiveness research studies that assess the relative effectiveness of:

* Different and/or combined medical, pharmacological, nutritional, behavioral, service-provision, and parent- or caregiver-implemented treatments;

* Scalable early intervention programs for implementation in underserved, low-resource, and low-literacy populations; and

* Studies of widely used community intervention models for which extensive published data are not available.

Outcome measures should include assessment of potential harm as a result of autism treatments, as well as positive outcomes. IACC Recommended Budget: $37,500,000 over 5 years.

Question 5: Where Can I Turn for Services?
Aspirational Goal: Communities Will Access And Implement Necessary High-Quality, Evidence-Based Services And Supports That Maximize Quality Of Life And Health Across The Lifespan For All People With ASD.

New Short Term Objectives:

2011 D. Support two studies to examine health, safety, and mortality issues for people with ASD by 2012. IACC Recommended Budget: $4,500,000 over 3 years.

New Long Term Objectives:

2011 D. Evaluate at least two strategies or programs to increase the health and safety of people with ASD that simultaneously consider principles of self-determination and personal autonomy by 2015. IACC Recommended Budget: $2,000,000 over 2 years.

2011 E. Support three studies of dental health issues for people with ASD by 2015. This should include:

* One study on the cost-benefit of providing comprehensive dental services, including routine, non-emergency medical and surgical dental services, denture coverage, and sedation dentistry to adults with ASD as compared to emergency and/or no treatment. IACC Recommended Budget: $900,000 over 3 years.

* One study focusing on the provision of accessible, person-centered, equitable, effective, safe, and efficient dental services to people with ASD. IACC Recommended Budget: $900,000 over 3 years.

* One study evaluating pre-service and in-service training program to increase skill levels in oral health professionals to benefit people with ASD and promote interdisciplinary practice. IACC Recommended Budget: $900,000 over 3 years.

Question 6: What Does the Future Hold, Particularly for Adults?
Aspirational Goal: All People With ASD Will Have The Opportunity To Lead Self-Determined Lives In The Community Of Their Choice Through School, Work, Community Participation, Meaningful Relationships, And Access To Necessary And Individualized Services And Supports.

New Short-Term Objectives: none
New Long-Term Objectives: none

Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?
Aspirational Goal: Develop And Support Infrastructure And Surveillance Systems That Advance The Speed, Efficacy, And Dissemination Of Autism Research.

New Short- and Long-Term Objectives

2011 N. Enhance networks of clinical research sites offering clinical care in real-world settings that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g., DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments by 2012. IACC Recommended Budget: $1,850,000 over 1 year.

2011 O. Create an information resource for ASD researchers (e.g., PhenX Project This link exits the Interagency Autism Coordinating Committee Web site) to share information to facilitate data sharing and standardization of methods across projects by 2013.

* This includes common protocols, instruments, designs, and other procedural documents and should include updates on new technology and links to information on how to acquire and utilize technology in development.

* This can serve as a bidirectional information reference, with autism research driving the development of new resources and technologies, including new model systems, screening tools, and analytic techniques.

IACC Recommended Budget: $2,000,000 over 2 years.

2011 P. Provide resources to centers or facilities that develop promising vertebrate and invertebrate model systems, and make these models more easily available or expand the utility of current model systems, and support new approaches to develop high-throughput screening technologies to evaluate the validity of model systems by 2013. IACC Recommended Budget: $1,100,000 over 2 years.

Release of the 2011 IACC Strategic Plan for Autism Spectrum Disorder Research

28 Feb

The IACC has released the 2011 Strategic Plan. I have quoted the announcement below, which includes the links:

The Interagency Autism Coordinating Committee (IACC) and the Office of Autism Research Coordination (OARC) are pleased to announce the release of the 2011 IACC Strategic Plan for Autism Spectrum Disorder Research. The updated Strategic Plan contains 16 new research objectives covering a variety of issues, including use and accessibility of interventions for non-verbal people with ASD, health promotion for people with ASD, and issues related to safety for people on the spectrum. The HTML version of this year’s Strategic Plan is fully hyperlinked throughout to websites with information about funders, programs and over 180 ASD-related publications, which should make the Plan an especially useful resource for people with ASD, families, providers, research funders, researchers, policymakers, and the public. A formatted, downloadable PDF version of the Plan is also available. Links to the new Strategic Plan and related information, including a news update about the Plan, can be accessed from the IACC Home Page.

US plan for autism research: focus on environmental causation re-emphasized

28 Feb

The Interagency Autism Coordinating Committee has released the 2011 Strategic Plan. This maps out the proposed directions that government funded research should take in regards to autism in the coming years.

The area that gets the most scrutiny is causation research, so I am blogging it first. Once again, the IACC has put forth a program with the major emphasis on environmental causation projects, with over 70% of funding going towards environmental causation:

Under short term objectives for “Question 3: What Caused This to Happen and Can It Be Prevented?” there are 6 new objectives for 2011. No new “long term” objectives.

Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2012. IACC Recommended Budget: $56,000,000 over 2 years.

Convene a workshop that explores the usefulness of bioinformatic approaches to identify environmental risks for ASD by 2011. IACC Recommended Budget: $35,000 over 1 year.

Support at least three studies of special populations or use existing databases to inform our understanding of environmental risk factors for ASD in pregnancy and the early postnatal period by 2012. Such studies could include:
o Comparisons of populations differing in geography, gender, ethnic background, exposure history (e.g., prematurity, maternal infection, nutritional deficiencies, toxins), and migration patterns; and
o Comparisons of phenotype (e.g., cytokine profiles), in children with and without a history of autistic regression, adverse events following immunization (such as fever and seizures), and mitochondrial impairment. These studies may also include comparisons of phenotype between children with regressive ASD and their siblings.
Emphasis on environmental factors that influence prenatal and early postnatal development is particularly of high priority. Epidemiological studies should pay special attention to include racially and ethnically diverse populations. IACC Recommended Budget: $12,000,000 over 5 years.

Support at least two studies that examine potential differences in the microbiome of individuals with ASD versus comparison groups by 2012.
IACC Recommended Budget: $1,000,000 over 2 years.

Support at least three studies that focus on the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes via epigenetic mechanisms to alter gene expression, by 2012. IACC Recommended Budget: $20,000,000 over 5 years.

Support two studies and a workshop that facilitate the development of vertebrate and invertebrate model systems for the exploration of environmental risks and their interaction with gender and genetic susceptibilities for ASD by 2012. IACC Recommended Budget: $1,535,000 over 3 years.

Many have claimed in the past that the IACC has not supported environmental causation. This is just not true, and it is not true going forward. Causation research in the past few Strategic Plans has focused the majority of funding on environmental and gene-environment causation.

Many have claimed that this blog is somehow against environmental causation research. Again, this is clearly not true.

I doubt either argument will go away. But, those are minor issues. What is important is what gets done. Causation research is important.

I would, and have, argued that research into supporting autistics alive today is also highly important. Research involving issues concerning autistic adults is vastly underfunded in my view. Total budget for new projects in the “WHAT DOES THE FUTURE HOLD, PARTICULARLY FOR ADULTS?” is zero. That’s right. No new projects in this area.

Besides neglecting the needs of a large number of adults today, this is poor planning for the future of today’s children. A person will spend about 75% of his/her life as an adult. Much, if not most, of that time without the support of parents.

Pain assessment among non-communicating intellectually disabled people described by nursing staff

28 Feb

How does a person with different communication get appropriate medical care? This is a problem that I think about a lot. When Pediatrics published Recommendations for evaluation and treatment of common gastrointestinal problems in children with ASDs, there was much debate about what it said or didn’t say about GI problems and autism. Leaving all that aside, I felt that the great strength of the paper was discuss the issues of medical care in a group of patients where communication and sensory difficulties can have a major impact on how the physician comes to a diagnosis. I was told by one doctor that about 70% (or more) of the information a doctor typically relies upon to come to a diagnosis is direct communication with the patient.

With that in mind, I was intrigued when I saw this abstract come up:

Pain assessment among non-communicating intellectually disabled people described by nursing staff.

Kankkunen P, Jänis P, Vehviläinen-Julkunen K.

Itä-Suomen Yliopisto, Kuopion Kampus, Hoitotieteen Laitos, PL 1627 70211, Kuopio, Finland.
Abstract

The purpose of this study was to describe pain assessment among non-communicating intellectually disabled people living in long term care described by nursing staff. The target group of the study consisted of the nursing staff working at seven mental retardation units in different parts of Finland. The data were collected during spring 2008 by a semi-structured questionnaire (Non-communicating Children’s Pain Checklist – Revised, N=222), and the response rate was 82% (n=181). The data were analyzed by statistical methods (Kruskall-Wallis test, Mann-Whitney U test) and by content analysis. The findings were described as parameters, frequencies, percentages, and as statistical significance.The nursing staff considered their competence in identifying pain in non-communicating intellectually disabled people to be adequate, and they were of the opinion that enough attention is paid to pain. Almost all nursing staff assessed pain and the effect of treatment of pain on the basis of behavioural changes. Two thirds assessed the pain based on physiological changes. However, no pain assessment tools were used to assess pain and the effects of managing it. Two thirds of the staff considered the pain threshold to be high among non-communicating intellectually disabled people.The findings of this study can be utilized in nursing practice and research, as well as in further education for pain assessment. Additional studies are needed to develop pain assessment to be more systematic among non-communicating intellectually disabled people.

I’m not fond of the term “non-communicating”, but I also recognize that the title of a paper doesn’t give one much room to make a more nuanced statement. That said, I like that this team is attempting to work out how to treat a patient with whom the nurses do not have verbal or other direct communication.

This is a tough balancing act. Obviously, I would like to think that pain is managed. I would also like to know that patients are not over-medicated either. So when I read that the nurses felt that “considered their competence in identifying pain in non-communicating intellectually disabled people to be adequate, and they were of the opinion that enough attention is paid to pain” I want to believe it, but I also want verification. As noted in the abstract, “no pain assessment tools were used to assess pain and the effects of managing it”. This is a start, but only a start. As the authors note: ” Additional studies are needed to develop pain assessment to be more systematic among non-communicating intellectually disabled people.”

At the Boston Conservatory, autistic students learn from music lessons

26 Feb

From Boston.com: At the Boston Conservatory, autistic students learn from music lessons

The Boston Conservatory is renowned for its intensive training in the performing arts, but on Saturday mornings, this Fenway institution offers a unique program: providing music lessons to children and young adults with autism.

I really appreciate it when people work to give more than just music therapy, but music lessons. In some cases it may take a lot of patience, but if a person is moved by music, it is worth the time.

The article is short, so if I quote much I’ll basically be copying the entire piece. Read more here.

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.

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