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Politics win over the rights of the disabled: The CRPD

8 Dec

The American Senate voted for the Convention on theRights of Persons with Disabilities, CRPD, just not by enough of a margin to pass it. The vote was 61 to 34 with 3 abstentions.

Rick Santorum was a force against the Convention. He is quoted in a number of places as stating:

“If it weren’t for you, the U.S. Senate wouldn’t have defeated the United Nations Convention on the Rights of Persons with Disabilities. Your petition signatures (over 20,000!), phone calls, emails and tweets about CRPD’s flaws made the difference.”

When I read such a statement, I am saddened that I didn’t do more to get out the word to voice support. Not that this site would have made the difference, but I wish I had done more.

The Convention was rejected by groups who felt the U.S. should not cede sovereignty over these decisions. A major point is this: the U.S. doesn’t really respond to the U.N. anyway. Sorry to put it so bluntly, but the major force behind enforcing the will of the U.N. is the U.S.. Also, if we as a people are already following the rules set forth in the Convention, we are not going to cede sovereignty to anyone, right? But, still, the specter of “the UN will tell the US how to treat their disabled children” was raised.

On CNN’s Anderson Cooper show, this point was discussed, including this rather strong statement to the contrary by John Kerry:

SEN. JOHN KERRY (D), MASSACHUSETTS: Well, I have great respect for both Rick and his wife, Karen, and their daughter and their family. He’s a strong family man. But he either simply hasn’t read the treaty or doesn’t understand it or he was just not factual in what he said, because the United Nations has absolutely zero, zero, I mean, zero ability to order or to tell or to even — I mean, they can suggest, but they have no legal capacity to tell the United States to do anything under this treaty. Nothing.

How about the other side of the discussion? In what areas might we as a people not agree with what is in the Convention? Health care. You read that correctly, health care. The country that spends the most on health care in the world is worried that the UN would impose their rule on us in health care of the disabled.

RICK SANTORUM (R), FORMER U.S. SENATOR: This is a direct assault on us and our family to hand over to the state the ability to make medical determinations and see what is in the best interest of the child and not look at the wonderful gift that every child is.

I see a familiar theme here. The disabled are all children. Moving on, one might ask, “in what way would health care be an issue?” Here is the section of the CRPD on health care:

States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:

a.Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;
b.Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
c.Provide these health services as close as possible to people’s own communities, including in rural areas;
d.Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
e.Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;
f.Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

In case you are wondering what in that raised concerns, it’s this phrase: “including in the area of sexual and reproductive health”. Yes. The U.S. didn’t ratify the Convention because some groups are concerned that it includes right to birth control, including abortions.

But that’s not all. By putting “population-based public health programmes” adjacent to that statement, the door was opened for this sort of fear mongering:

Bradley Mattes, president of the International Right to Life Federation, stated, “This is a misleading measure in that it does nothing to protect life. It is disguised as a way to ‘help’ the disabled. Instead it intentionally sacrifices the most vulnerable – the disabled and the unborn – all in the name of population control.”

Yes, “population based public health programs” become “population control”. In case you are wondering, here are a few definitions of “population-based” in regards to health care, including:

Population-based care involves a new way of seeing the masses of individuals seeking health care. It is a way of looking at patients not just as individuals but as members of groups with shared health care needs. This approach does not detract from individuality but rather adds another dimension, as individuals benefit from the guidelines developed for the populations to which they belong.

No, it is not population control. “Population-based care” isn’t a scary thing.

There is another area where the way the U.S. acts today might be called into question on the issue of health care: “Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.” There have been a few high profile cases in recent times where individuals were denied transplants due to disability.

In the end, this is a sad day for the U.S.. We have shown the world that we would rather not open ourselves up to criticism. Yes, criticism. That’s the most that could come out of the CRPD from members of the U.N., criticism. Which we would veto. We would rather not face criticism than provide leadership in the world and give ourselves leverage to help enact real change in other countries. If another country abuses its disabled citizens, what are we going to say? “Hey, you aren’t respecting the rights of your disabled citizens.” Yeah. That will carry a lot of weight.

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By Matt Carey

NCD Statement on Failed CRPD Ratification Vote in the Senate

7 Dec

The National Council on Disability (NCD) has released a statement about the failure of the U.S. Senate to ratify the CRPD (Convention on the Rights of Persons with Disabilities). The text of the Convention can be found online.

WASHINGTON, DC – The Chairman of the National Council on Disability (NCD), an independent federal agency, expressed his deep disappointment that the United States Senate fell short of the votes needed to pass the resolution for ratification of the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

“Yesterday, the United States had an opportunity to join more than 120 countries in a unified commitment to protect the rights of people with disabilities around the globe. It is deeply disappointing the Senate chose not to do so at this time. The CRPD was conceived with the same goals as the Americans with Disabilities Act (ADA): to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society,” said Jonathan Young, NCD Chairman. “Through the development phase of the treaty and our support throughout the process, NCD has proudly encouraged the adoption of the same protections Americans with disabilities enjoy because of the ADA to other nations worldwide.

Almost one decade ago, the National Council on Disability kicked off U.S. disability community consideration of an international treaty by publishing a White Paper titled “Understanding the Role of an International Convention on the Human Rights of People with Disabilities.” Since that time, NCD has published numerous documents and reports in support of the development, signature and ratification of the CRPD.

“It is devastating that the Senate did not take this leap forward with the same bipartisan effort the community had with the ADA in advancing the quality of life for people with disabilities in the U.S. and worldwide, but NCD will continue to recommend ratification of this historic treaty to the 113th Congress,” added Joan Durocher, NCD’s General Counsel and Director of Policy.

About the National Council on Disability: NCD is an independent federal agency of 15 Presidentially-appointed Council Members and full-time professional staff, who advise the President, Congress and other federal agencies on disability policy, programs, and practices.

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By Matt Carey

Senate Rejects UN Disability Treaty

4 Dec

Disability Scoop is reporting: Senate Rejects UN Disability Treaty. The Convention on the Rights of Persons with Disabilities (CRPD) has been rejected:

Despite strong support from disability advocacy groups, Republican opposition led the U.S. Senate to reject an international disability rights treaty on Tuesday.

In a vote that fell almost entirely along party lines, supporters were unable to secure the two-thirds majority of senators needed to ratify the United Nations Convention on the Rights of Persons with Disabilities.

More at Disability Scoop.

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By Matt Carey

Missing Family With “Suicide Pact” Due To Autism Costs

3 Dec

This story reminds me of another story from years back. But it is happening now. The story, Missing Family With “Suicide Pact” Due To Autism Costs, is out of Melbourne Florida:

MELBOURNE, Florida — A Florida MISSING CHILD Alert has been issued for Kiah Firth, who was last seen wearing an all pink sundress with flower print and Kristin Firth, who was last seen wearing a dark blue sundress with a belt and a bowtie in the back.

Why are they looking for these children?

Law enforcement says that the “suicide pact” was the result of James and Mai Firth’s frustration that “Kristen’s” Autism is expensive to treat. James and Mai Firth stated they would kill the children and themselves if “the money ran out” or “Kristen” didn’t show improvement during treatment

Mai, your daughters are beautiful and only two and four years old.  You have no idea of their potential to be happy. Please, if this suicide pact is anything real, hand your children off to someone who will see that they are cared for.

The story gives pictures and descriptions of the family members and a description of their car:

The family may be traveling to San Francisco, California to board an international flight to Vietnam. The family is riding in a silver 2002 Lexus SUV, Florida license plate 612PGW, which is registered to James Firth.

If you have any information regarding the whereabouts of this family, please call the Melbourne Police Department at 321-409-2200, or Crimeline: 1-800-423-TIPS (8477), or the National Center for Missing and Exploited Children: 1-800- THE-LOST (1-800-843-5678).

There’s a lot that could be said at this point. But keep in mind that this is a Google news listed site and consider encouraging the family to not follow through on the pact. I hope that by running they are indicating that they are just planning to return to Vietnam.

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By Matt Carey

DSM 5 has been approved

1 Dec

Below is the announcement that the DSM 5 has been approved. No details on the approved criteria for autism. I found the link to the original posted to Facebook by the Autism Science Foundation.

A Message From APA President Dilip Jeste, M.D., on DSM-5

December 1, 2012

I am pleased to announce that DSM-5 has just been approved by APA’s Board of Trustees. Getting to the finish line has taken a decade of arduous work and tens of thousands of pro-bono hours from more than 1,500 experts in psychiatry, psychology, social work, psychiatric nursing, pediatrics, neurology, and other related fields from 39 countries. We look forward to the book’s publication next May.

The goal of the DSM-5 process has been to develop a scientifically based manual of psychiatric diagnosis that is useful for clinicians and our patients. APA’s interest in developing DSM dates back to the organization’s inception in 1844, when one of its original missions was to gather statistics on the prevalence of mental illness. In 1917, the Association officially adopted the first system for uniform statistical reporting called the Statistical Manual for the Use of Hospitals for Mental Diseases, which was adopted successfully by mental hospitals throughout the country. It was expanded into the first Diagnostic and Statistical Manual (DSM) in 1952 and first revised (DSM-II) in 1968. Like the rest of the field in that era, these first two versions were substantially influenced by psychoanalytic theories.

With advances in clinical and scientific knowledge, changes in diagnostic systems are inevitable. The World Health Organization’s International Classification of Diseases (ICD)—the standard diagnostic tool for epidemiology, health management, and clinical care used around the world, which covers all medical diagnoses—has been through 10 editions since the late 1800s and is now preparing its 11th edition, due in 2015. Likewise, DSM has undergone changes to take into account progress in our understanding of mental illnesses. DSM-III, published in 1980 under the leadership of Dr. Robert Spitzer, and DSM-IV, published in 1994 under the leadership of Dr. Allen Frances, represented the state of science of psychiatry at those times and significantly advanced the field.

In the two decades since the publication of DSM-IV, we have witnessed a wealth of new studies on epidemiology, neurobiology, psychopathology, and treatment of various mental illnesses. So, it was time for APA to consider making necessary modifications in the diagnostic categories and criteria based on new scientific evidence. But there were, of course, challenges inherent in revising an established diagnostic system The primary criterion for any diagnostic revisions should be strictly scientific evidence. However, there are sometimes differences of opinion among scientific experts. At present, most psychiatric disorders lack validated diagnostic biomarkers, and although considerable advances are being made in the arena of neurobiology, psychiatric diagnoses are still mostly based on clinician assessment.

Also, there are unintended consequences of psychiatric diagnosis. Some arise from the unfortunate social stigma and discrimination in getting jobs or even obtaining health insurance (notwithstanding the mental health parity law) associated with a psychiatric illness. There is also the double-edged sword of underdiagnosis and overdiagnosis. Narrowing diagnostic criteria may be blamed for excluding some patients from insurance coverage and needed services, while expanded efforts to diagnose (and treat) patients in the early stages of illness to prevent its chronicity are sometimes criticized for increasing its prevalence and potentially expanding the market for the pharmaceutical industry. (It should be noted, however, that DSM is not a treatment manual and that diagnosis does not equate to a need for pharmacotherapy.)

APA has carefully sought to balance the benefits of the latest scientific evidence with the risks of changing diagnostic categories and criteria. We realize that, given conflicting views among different stakeholders, there will be inevitable disagreements about some of the proposals— whether they involve retaining the traditional DSM-IV criteria or modifying them.

The process of developing DSM-5 began in earnest in 2006, when APA appointed Dr. David Kupfer as chair and Dr. Darrel Regier as vice chair of the task force to oversee the development of DSM-5. The task force included the chairs of 13 diagnostic work groups, who scrutinized the research and literature base, analyzed the findings of field trials, reviewed public comments, and wrote the content for specific disorder categories within DSM-5. To ensure transparency and reduce industry-related conflicts of interest, APA instituted a strict policy that all task force and work group members had to make open disclosures and restrict their income from industry. In fact, the vast majority of the task force and work group members had no financial relationship with industry.

To obtain independent reviews of the work groups’ diagnostic proposals, the APA Board of Trustees appointed several review committees. These included the Scientific Review Committee (co-chaired by Drs. Ken Kendler and Robert Freeman), Clinical and Public Health Committee (co-chaired by Drs. Jack McIntyre and Joel Yager), and APA Assembly Committee (chaired by Dr. Glenn Martin). Additionally, there was a forensic review by members of the Council on Psychiatry and Law. Drs. Paul Appelbaum and Michael First were consultants on forensic issues and criteria/public comments, respectively. Reviews by all these groups were coordinated in meetings of the Summit Group, which included the task force and review committee co-chairs and consultants along with members of the Executive Committee of the Board of Trustees

There has been much more public interest and media scrutiny of DSM-5 than any previous revisions. This reflects greater public awareness and media interest in mental illness, as well as widespread use of the Internet and social media. To facilitate this transparent process, APA created a Web site (www.dsm5.org) where preliminary draft revisions were available for the public to examine, critique, and comment on. More than 13,000 Web site comments and 12,000 additional comments from e-mails, letters, and other forms of communication were received. Members of the DSM-5 work groups reviewed the feedback submitted to the Web site and, where appropriate, made modifications in their proposed diagnostic criteria.

We believe that DSM-5 reflects our best scientific understanding of psychiatric disorders and will optimally serve clinical and public health needs. Our hope is that the DSM-5 will lead to more accurate diagnoses, better access to mental health services, and improved patient outcomes

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By Matt Carey

Ari Ne’eman on CSPAN’s Washington Journal

1 Dec

Ari Ne’eman of the Autsitic Self Advocacy Network (ASAN) participated in a call-in show, Washington Journal, on C-Span today. Here is that video.

http://www.c-span.org/Events/Washington-Journal-for-Saturday-December-1/10737436230/

As of now, this seem to work only on “desktop/laptop” computers, not mobile devices. Also, I can not get the video to embed in this article.

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By Matt Carey

Mr. Wright, is autism an epidemic or not? Why not give real examples of how to make a financial impact?

30 Nov

Bob Wright co-founded Autism Speaks and was their representative to the congressional hearing held yesterday. As part of that hearing, he called autism an “epidemic”, stating:

More than seven years have passed since my wife, Suzanne, and I founded Autism Speaks. During that time, we have seen the prevalence of autism in America nearly double – from 1 in 166 children in 2005 to 1 in 88 today, including 1 of every 54 boys. The prevalence of autism has increased by 1,000 percent over the last 40 years.

Mr. Wright’s testimony also included the statement: “The annual cost of autism in the United States is now estimated at $137 billion – a
figure that exceeds the gross domestic product of 139 countries.”

I tried to work out how Mr. Wright arrived at that figure and couldn’t easily get there. Why, you might ask? It’s nice to cross check: do figures someone assumes match the statements they are making. Luckily a recent interview makes it clearer how he came to these figures:

According to Wright, autism creates costs of $137 billion a year for the U.S., breaking down to $60,000 per year for family. Most of these costs are borne by the parents of the autistic child. Wright told Mitchell he’s “optimistic” after Thursday’s testimony but Congress needs “to have a plan” and “a will to execute it.”

Aside, more burden language. In my family, most of the difficulties with autism are lived by my kid, but I’ll move on. Partly because most of the “costs” in these estimates are incurred by adults.

A bit of quick math to see what autism prevalence Mr. Wright is assuming for autism in his calculation.

$137,000,000,000 cost total divided by 60,000 cost per family is 2,283,333 families. The US Population is currently estimated at 311,591,917. Combining these: 2,283,333 is 0.73% of 311,519,917. That would be an average of 0.73%, across all age groups. 1 in 136. Not so far from the 1 in 88 of the current autism prevalence estimate in the US for eight year olds.

But, wait, he didn’t say it that way. He didn’t say that it was $60,0000 per individual. He said “families”. Let’s take “households” as the estimate of how many families there are in the US: 114,235,996. 2,283,333 is 2% of 114,235,996. Average, across age groups. 2% of families/households have an autistic in them? It’s really the same figure as above (about 0.73%), but in another format. (in the original version of this article, I didn’t catch that fact).

So, Mr. Wright (or whoever in his staff produced these figures) is assuming an autism prevalence somewhere around 1 in 136 (0.73%). Which is pretty close to the current estimate of 1 in 88. Except that Mr. Wright’s figures appear to assume a flat prevalence over age. I.e. no epidemic. So, on the one hand we are told that autism rates are rising to make one scary point, on the other we are told autism costs a lot of money to make another scary point. But both statements are based on polar opposite assumptions. These were political and public relations statements, so it is almost expected that they won’t be self-consistent.

OK, let’s leave behind the “gotcha” phase of the article and re-analyze the statement more closely. He uses the figure of $3.2M as the lifetime cost of autism. That figure comes from this study: The lifetime distribution of the incremental societal costs of autism.

Taking just the results and conclusions of the abstract from that study:

RESULTS:
The lifetime per capita incremental societal cost of autism is $3.2 million. Lost productivity and adult care are the largest components of costs. The distribution of costs over the life span varies by cost category.

CONCLUSIONS:
Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood. The substantial costs resulting from adult care and lost productivity of both individuals with autism and their parents have important implications for those aging members of the baby boom generation approaching retirement, including large financial burdens affecting not only those families but also potentially society in general. These results may imply that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood.

If one is going to discuss autism as a “societal cost” issue, one has to focus on where those costs are. The “low hanging fruit” of reducing societal costs are in “Lost productivity and adult care”. Productivity costs were calculated including:

Productivity losses for people with autism were estimated by combining standard average work-life expectancies for all men and women taken from the economics literature (ages 23-57 years for men and 23-53 years for women), 34 with average income and benefits (from Tables 696 and 628 of the Statistical Abstract of the United States36) and estimates of age- and sex-specific labor force participation rates

.

And a similar estimate assuming some amount of un and underemployment for the parents. But, even with the parental lost income assumed, the largest “costs” to society are for adults. Not really surprising as people spend much more of their lives as adults than as children. This begs many questions. I’ll start with: how much of this “cost” to society, right now, is being incurred because our adult autistics are un- and under-employed? Or to put it in a way to entice a member of Congress, how much money could the U.S. be saving, right now, if we did a better job supporting some fraction of the autism population into employment?

About 2/3 of the U.S. population is in the employable age range (18-65). That’s about 208 million Americans. Assume an autism prevalence of 1%. That’s 2.08 million Americans. Assume 1/10 of those are employable but unemployed. That would give about 208,000 Americans. Let’s take $30,000 per year as salary+benefits for these workers. That’s $6,240,000,000 ($6B) that could be realized if we could get this assumed fraction of autistics from unemployed to employed. Not including whatever is being paid out in unemployment or social security to this unemployed population.

One can quibble with the assumptions here, but we are talking big numbers here. The sort that should catch a legislator’s eye. For those who want to quibble with the idea that the autism prevalence is flat: hey, Bob Wright did it. More to the point, it’s probably correct to assume a relatively flat prevalence. And if you have real data to the contrary, you have data that is either unpublished (and I’d love to see it), incorrect or misinterpreted.

One reason to make this sort of calculation, i.e. focusing on autistics who can be employed, is that it is easy and direct. The math is simple. What about autistics who are not so close to employment, or not close at all? Autistics adults who are similar to my kid. How much do we save by investing in them? I would say a great deal. Each step helping a person move from a more restrictive adult support system to a more independent system will save money. Potentially lots of money. If that’s what congress needs to hear to be interested, fine. These are ways to make the financial impacts that should be attractive in Congress.

Rather than focus on the “costs”, I’d rather focus on what can make a person’s life better. Is the reward of a job merely the salary? I don’t think so. For those who experience even greater challenges, giving a person the ability to self-advocate to the point of not being an even bigger target is invaluable. It could stop problems like those discussed here recently.

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By Matt Carey

Note, I made edits to this piece within the first 30 minutes of it being published.

Have a response to the congressional hearing? Let it be heard

30 Nov

Yesterday the U.S. House Commitee on Oversight and Government Reform held a hearing on autism. One can see it in the videos below. The Fist videos are from the government panelists Coleen Boyle Director of the National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention and Alan Guttmacher, Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health. The third video has the public panelists Bob Wright, Co-Founder Autism Speaks, Mr. Scott Badesch President Autism Society,
Mr. Mark Blaxill, Board Member SafeMinds, Bradley McGarry Coordinator of the Asperger Initiative at Mercyhurst Mercyhurst University, Mr. Michael John Carley Executive Director Global & Regional Asperger Syndrome Partnership, Mr. Ari Ne’eman (testimony) President Autistic Self Advocacy Network.

For the third video, here are the rough times for the start of the opening statements:

Bob Wright: 4:10
Scott Badesch: 10:00
Mark Blaxill: 16:00
Bradley McGarry:21:00
Michael John Carley: 26:00
Ari Ne’eman: 33:30

Discussions of the hearing can be found at Congressional Autism Hearing Recap (Thinking Person’s Guide to Autism) and Live blogging the autism hearing Autism hearing, round two (Autism News Beat).

If you have a response to the hearing you would like to make, they are accepting public comments for 7 days after the hearing (if I understood the Chairman correctly). One way you can is by sending a fax, using this form.

ASAN President Ari Ne’eman on C-SPAN’s Washington Journal Tomorrow (Saturday) at 9:15 AM

30 Nov

CSPAN will be hosting a program discussing autism with Autistic Self Advocacy Network (ASAN) president Ari Ne’eman tomorrow. Below is the email I received from ASAN:

ASAN President Ari Ne’eman on C-SPAN’s Washington Journal
Tomorrow at 9:15 AM

Yesterday was a historic day for the Autistic self-advocacy movement. For the first time, we had representation at a congressional hearing on autism. Although much of yesterday’s House Committee on Oversight and Government Affairs hearing focused on the same tired old questions on causation and cure, but thanks to your efforts, we had a seat at the table to offer another perspective for the first time.

Tomorrow, we’ll have a chance to continue having our voices heard. C-SPAN’s influential morning call-in program Washington Journal has invited ASAN President Ari Ne’eman to come on the show tomorrow morning from 9:15-10 AM to discuss federal disability policy, autism acceptance and the neurodiversity movement. And we want you to be a part of it.

To participate, you can call-in, email or tweet. C-SPAN has specifically urged Autistic people to participate, and has provided a dedicated call in line to help make sure we get on the air.

Call-In Numbers:
Democrats: (202) 585-3880
Republicans: (202) 585-3881
Independents: (202) 585-3882
Autistic People: (202) 585-3883
Email: journal@c-span.org
Twitter: http://twitter.com/cspanwj

Please follow us as we also livetweet from @autselfadvocacy with hashtag #AutismOnCSPAN.

I assume that times are Eastern Standard.

California Police Ignored, Mishandled Sex Assaults Reported by Disabled

30 Nov

This story from The Daily Beast: California Police Ignored, Mishandled Sex Assaults Reported by Disabled. Obviously potentially a trigger.

We’ve discussed sexual assaults in group homes in California in the past few years. Police made some of those cases priorities. The Daily Beast story discusses cases where there is a lack of even basic OK investigation:

Patients at California’s board-and-care centers for the developmentally disabled have accused caretakers of molestation and rape 36 times during the past four years, but police assigned to protect them did not complete even the simplest tasks associated with investigating the alleged crimes, records and interviews show.

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