This Article About the JRC Is Very Enlightening, If You Can Stand to Read It

"Prisoners of the Apparatus": The Judge Rotenberg Center, by Quentin Davies of the Autistic Self Advocacy Network

The article is very long (though very much worth reading in full, if you have the time and concentration for it), so I'm going to excerpt the section at the end that talks about what the best avenues for shutting the place down permanently would be:

Policy Recommendations
The Judge Rotenberg Center's abusive behavior is a civil rights concern, and should be addressed by policy at the federal level. As the New York Psychological Association Task Force said, the use of shock aversives on the students at the Judge Rotenberg Center would be considered corporal punishment and would be illegal if the nondisabled people were treated the same way in a school setting. Regulations that selectively allow abusive punishment for disabled students that are not allowed for nondisabled students is not only a terrible allowance of abuse, but also is a discriminatory action on the part of the United States and Massachusetts governments, regardless of whether we call this "corporal punishment" or "aversive behavioral intervention" (Ahern and Rosenthal 27). Additionally, the lack of actual instruction within the Judge Rotenberg Center, the social isolation, the food deprivation, the use of restraints and seclusion as punishment and for long periods of time mean that preventing the Judge Rotenberg Center from using shock aversives, while it would be a step in the right direction, would not be broad enough to stop the abuse at the Center. The Judge Rotenberg Center (formerly called the Behavior Research Institute) has tortured disabled children and adults for over forty years, and it needs to stop now. 

This policy must be passed at the federal level. The Judge Rotenberg Center has been located in three different states over its history, and there is a real possibility of the JRC moving again if protections were only ensured on a state level (Méndez). Currently, there is some federal policy that is applicable to the Judge Rotenberg Center, but much of that legislation has been weakened by court action. For example, in 1975, Congress passed the "Developmental Disabilities Assistance and Bill of Rights Act" (DD Act), which states, that "the Federal Government and the States have an obligation to ensure that public funds are provided only to institutional programs, residential programs, and other community programs, including educational programs in which individuals with developmental disabilities participate, that  ... meet minimum standards relating to provision of care that is free of abuse, neglect, sexual and financial exploitation, and violations of legal and human rights that subjects individuals with disabilities to no greater risk of harm than others in the general population ... and prohibition of the use of such restraint and seclusion as a substitute for a habilitation program" (Ahern and Rosenthal 29). However, in the case, Pennhurst State School and Hospital vs. Halderman, where a former Pennhurst resident alleged that the hospital was unsanitary, inhumane, dangerous, and used cruel and unusual punishment, the US Supreme Court ruled that the DD Act did not create any new legal rights or protections and [that] the language of the DD Act was "hortatory not mandatory." That court opinion, written by William Rehnquist, stated that "[t]he Act does no more than express a congressional preference for certain kinds of treatment" (Ahern and Rosenthal 30). Consequently, new legislation that has similar goals but expresses them in a way that is clear about the mandatory nature of the legislation is necessary. 

Although the President's New Freedom Commission on Mental Health has said that "restraint will be used only as safety interventions of last resort, not as treatment interventions" and the US Department of Health and Human Services Substance Abuse and Mental Health Administration has said that restraint and seclusion are "detrimental to the recovery of persons with mental illnesses" (Ahern and Rosenthal 12), no federal legislation has enforced these goals. Restraints and seclusion are still used in almost every state in the United States, and no federal law limits the use of restraints within schools (Ahern and Rosenthal 28). The Individuals with Disabilities Education Act (IDEA) states that alternatives to aversives should be considered, but does not explicitly prohibit aversives (Ahern and Rosenthal 29). None of these recommendations have protected the students at the Judge Rotenberg Center from the torturous treatment they have experienced. 

Federal law could draw from the state laws of California, Connecticut, Florida, North and South Dakota, Pennsylvania, Arizona, Rhode Island, New York, New Jersey, Nevada, and Colorado, all of which have taken steps to ban or limit the use of aversives on disabled children and adults (Cobb 9). A US Court of Appeals found in Bryant vs. New York State Department of Education (2012) that bans on aversive interventions did not violate IDEA as was alleged by the plaintiffs. The decision reads "[w]e conclude that prohibiting one possible method of dealing with disorders in behavior, such as aversive intervention, does not undermine a child's right to an individualized, free and appropriate public education, and that New York's law represents the State's considered judgment regarding the education and safety of its children that is consistent with federal education policy and the United States Constitution" (Bryant 2). Federal law prohibiting aversive interventions would provide protection throughout the US for disabled children and adults subjected to aversive techniques, including the students of the Judge Rotenberg Center.

That was a lot of densely written text, so I will attempt to paraphrase: To close the Judge Rotenberg Center, we need legislation that is 1) federal, not state; 2) comprehensive in what types of abuses it prevents (i.e., not narrowly focused on the skin shock devices); and 3) unmistakably binding and mandatory.

It needs to be those things because the JRC's own history shows that it can survive measures that do not meet all three of those criteria. If you outlaw what they do on a state level, they move. If you call attention to the barbarity of one particular method of punishment, they switch to others. If you say, "This is not a school and we will not give you a license to operate it," they re-incorporate, changing their paperwork but not their methods. If you sue them on the grounds that they violate an existing federal law (like, say, the DD Act), a court might well rule that the law is not absolute. And, finally, if you threaten to ban the device they use to administer the infamous skin shocks, on the grounds that it's not safe, they will stop using it -- but only on new students. Students who have been living there since before 2011 will continue to be shocked as before. 

It needs to be torn out, root and stem.

Carthago delenda est.

Kansas City, Don't Get on This Bandwagon

Just this past weekend I read something that upset me very much: the City Council of Kansas City, Missouri is considering making it illegal to give food to homeless people without having a permit from the city to do so.

You can read the proposed ordinance here (PDF).

Because it's a couple pages long and legal writing is dense, I'll also excerpt the relevant bits of it here:

Section 8-301.11 of the 2005 Food Code is amended to read as follows: A PERSON may not operate a FOOD ESTABLISHMENT without a valid PERMIT to operate issued by the REGULATORY AUTHORITY. A PERMIT is required to apply for and obtain and pay for a separate FOOD ESTABLISHMENT PERMIT for each of the types of FOOD ESTABLISHMENT operations listed in subsections (1) through (13): 

... 

(13) Food Sharing Permit: issued to a not-for-profit granted tax-exempt status under any provision of Section 501(c) of the Internal Revenue Code ... that is distributing food free of charge for the sole purpose of impacting food insecurity in Kansas City, Missouri. Food sharing permits are not intended to cover food sharing taking place within permitted food establishments. Any already-permitted food establishments shall not need a food sharing permit to offer food free of charge to the public within the confines of the already-permitted establishment. All potentially hazardous food shall be prepared in a permitted kitchen and any processed foods must be pre-packaged. All food shall be labeled with the name or identifier of the permittee and disposed of four (4) hours after being removed from active temperature control. On site food preparation is prohibited with a Food Sharing Permit. Permit holders shall provide waste receptacles if none are readily available or if on-site receptacles are not adequate to collect the waste generated, while distributing food pursuant to the permit and when necessary, shall collect and remove any food or container waste. Food sharing permittees shall not distribute food within one block of a school on a day in which school is in session during the 30 minute period preceding school or the 30 minute period after adjournment. All other Food Code requirements shall be followed, including the obtaining of food handler cards. Re-inspection fees shall be those as set for catering permits. There shall be no cost for the initial food sharing permit or for any routine annual renewals.

It's not clear from this text whether any of this applies to a single person handing out food on their own. (At least, it's not clear to me.)

I'm also not clear on what the implications are for a group that's not a formally recognized nonprofit, like a social club, that might want to distribute food.

The ordinance itself, and City Council member Melba Curls in comments to the public at a protest rally held June 4 at City Hall, cite public health as one of the reasons why the ordinance was drafted.

Intuitively, that makes sense. By making a city-issued permit a requirement to distribute food, the city can keep track of who is distributing food and periodically inspect the kitchens where they prepare it. They can make sure that those kitchens are clean, and that the food that passes through them is not carrying any disease-causing microorganisms.

I'm not sure it would really play out like that, though.

First of all, I'm not aware of any recent outbreaks of food-borne illness here originating in soup kitchens; all the ones I remember reading about originated in restaurants, or on farms or food processing plants.

Example.

Other example.

Other example.

Other example.

(It's true, if the contaminated food items end up in grocery stores, they could find their way to a soup kitchen or food pantry's shelves. But it seems like the most efficient way to catch contaminated produce before it makes someone sick would be to do your screening as each shipment reaches the stores, not at whatever secondary or tertiary destination the food is actually eaten.)

So I'm not sure how helpful this measure will be in reducing the number or extent of outbreaks of food-borne illness, and at the same time I'm sure this will have a chilling effect on efforts to feed the city's hungry people. 

(How could it not? It's adding red tape where before there was none. Also, some of the people who are doing that work showed up at the protest rally and said that the ordinance would make it harder for them to operate. So this isn't just me coming up with hypotheticals; this is a thing that people who work at feeding the homeless say will probably happen.)

I'm also aware of a larger pattern around the nation of criminalizing either homelessness itself or ordinary citizens giving food to homeless people.

And I also know that Kansas City is currently hustling to market itself as a cool, happening city to attract the wealthier members of my generation. 

I am made very cynical about what it means to do that, largely by the spectacle of San Francisco all but waging open war on its poor people to curry favor with the Silicon Valley professional classes. 

Republicans vs. the EPA - Part II

In this installment of the "Republicans vs. the EPA" series I'm going to focus on one particular legislative attempt to abolish the EPA.

In the spring of 2011, Republican legislators in both houses introduced two versions of a bill that would abolish both the EPA and the Department of Energy, and replace them with a combined Department of Energy and Environment.

This was promoted as a cost-saving measure, but it seems to me that it would also mean the environmental-protection aspect of the combined agency's mission would necessarily be compromised by no longer being the sole guiding purpose of its own agency, but instead one of many different, sometimes competing objectives.

For instance, the proposed DOEE would be responsible, not just for drafting and enforcing regulations to protect the environment and human health, but also for making sure the country's power plants (particularly the nuclear ones) are safe from terrorist attacks, and for research into better ways to generate electricity.

It seems to me very likely that, in the tug-of-war for funding, the counterterrorism and R&D functions would win a greater share of the agency's budget than the boring, stick-in-the-mud regulatory function. I also find it easy to imagine intra-agency pressure building on the regulatory side not to regulate natural-resource extraction too heavily --- especially in areas where the expected energy yield is high, like the use of hydraulic fracturing to get at buried reservoirs of natural gas.

(You don't have to take my word for it that combining these agencies would produce a conflict of interest, either --- here's a short article that former DOE employee Joe Romm wrote for Think Progress explaining why he thinks that would be the likely outcome of such a merger.)

Anyway, that's enough background information. On to the lists!

Here are the seventeen Republican senators who co-sponsored the Senate version of the bill:
Sen. John Barrasso (R-WY)*
Sen. Roy Blunt (R-MO)
Sen. John Boozman (R-AR)
Sen. Richard Burr (R-NC) - wrote and introduced the bill
Sen. Dan Coats (R-IN)
Sen. Tom Coburn (R-OK)
Sen. Thad Cochran (R-MS)
Sen. Jim DeMint (R-SC)
Sen. Mike Enzi (R-WY)
Sen. Orrin Hatch (R-UT)
Sen. Kay Bailey Hutchison (R-TX)
Sen. Ron Johnson (R-WI)
Sen. Mike Lee (R-UT)**
Sen. John McCain (R-AZ)
Sen. Richard Shelby (R-AL)
Sen. John Thune (R-SD)
Sen. Pat Toomey (R-PA)
Sen. David Vitter (R-LA)

And here are the eleven House members who co-sponsored the House version of the bill almost a year later:
Rep. Marsha Blackburn (R-TN) - introduced and sponsored bill
Rep. Steve Chabot (R-OH)
Rep. Renee Ellmers (R-NC)
Rep. Scott Garrett (R-NJ)
Rep. Kay Granger (R-TX)
Rep. Tim Huelskamp (R-KS)
Rep. Sam Johnson (R-TX)
Rep. Blaine Luetkemeyer (R-MO)
Rep. Sue Wilkins Myrick (R-NC)
Rep. Ted Poe (R-TX)
Rep. David P. (Phil) Roe (R-TN)

The Senate bill seems to have died in committee on the same day it was introduced. The House bill, though it bounced around lots of different committees, also seems to have been tabled. Neither one ever came up for a vote.

*I'm really tempted, doing those party-and-state abbreviations, to borrow Melissa McEwan's convention of writing things like "R-Epulsive", "R-Idiculous," "R-etrograde," "R-Eally??", etc. But I figured I'd best stick with writing their actual state, in the interest of providing more information.

**Aren't Wyoming and Utah lucky? Both of those states' entire Senate delegations co-sponsored this bill!

New Medicaid Regulations Are Open to Public Comment

A little over a month ago, the Centers for Medicare and Medicaid Services proposed some new rules for home- and community-based services for people with disabilities, trying to ensure that states do everything they can to make sure that disabled people covered by Medicaid can actually get the services they need in their own homes, or in supported residential settings where they have the same amount of freedom and control over their own lives that they would if they were living on their own.


That's the spirit of the law, anyway. Lots of advocacy groups made up of people whom this law is supposed to benefit have written recommendations for wording that makes sure the letter of the law honors the spirit --- that health-care providers receiving Medicaid funding to give people supportive housing don't just take the money and throw the intended beneficiaries into a group home that reproduces all the restrictions, power dynamics, and other bad things about institutions in a somewhat different setting.


The rule change is open to public comment until Monday; I'd like to add my voice to a chorus of voices emphasizing just how important autonomy and freedom from restriction are. If you have anything to say about it, especially if you've got any concrete ideas or relevant personal experiences, go here, click the big blue "Comment Now!" button, and let loose.


The Autistic Self-Advocacy Network and the Administration on Intellectual and Developmental Disabilities have both written about this proposed rule change; AIDD's page  is an easy-to-read summary of what the rules entail, while ASAN's page is more of a critique.


Here is the proposed definition of "home and community-based setting":

(i) The setting is integrated in, and facilitates the individual's full access to, the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, in the same manner as individuals without disabilities. 

(ii) The setting is selected by the individual from among all available alternatives and is identified in the person-centered service plan. 

(iii) An individual's essential personal rights of privacy, dignity and respect, and freedom from coercion and restraint are protected. 

(iv) Individual initiative, autonomy, and independence in making life choices, including but not limited to, daily activities, physical environment, and with whom to interact are optimized and not regimented. 

(v) Individual choice regarding services and supports, and who provides them, is facilitated. 

(vi) In a provider-owned or controlled residential setting, the following additional conditions must be met. Any modification of the conditions, for example, to address the safety needs of an individual with dementia, must be supported by a specific assessed need and documented in the person-centered service plan: 

  (A) The unit or room is a specific physical place that can be owned, rented or occupied under another legally enforceable agreement by the individual receiving services, and the individual has, at a minimum, the same responsibilities and protections from eviction that tenants have under the landlord tenant law of the State, county, city or other designated entity; 

(B) Each individual has privacy in their sleeping or living unit:         (1) Units have lockable entrance doors, with appropriate staff having keys to doors;         (2) Individuals share units only at the individual's choice; and         (3) Individuals have the freedom to furnish and decorate their sleeping or living units. 

(C) Individuals have the freedom and support to control their own schedules and activities, and have access to food at any time; 

(D) Individuals are able to have visitors of their choosing at any time; and  

(E) The setting is physically accessible to the individual.

They also spell out what a "home and community-based setting is not:

Home and community-based settings do not include the following: 

(i) A nursing facility; 

(ii) An institution for mental diseases; 

(iii) An intermediate care facility for [people with intellectual disabilities] 

(iv) A hospital providing long-term care services; or 

(v) Any other locations that have qualities of an institutional setting, as determined by the Secretary. The Secretary will apply a rebuttable presumption that a setting is not a home and community-based setting, and engage in heightened scrutiny, for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient or institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex.

And here is the definition of "person-centered service plan": 

The person-centered service plan must reflect the services and supports that are important for the individual to meet the needs identified through an assessment of functional need, as well as what is important to the individual with regard to preferences for the delivery of such services and supports. Commensurate with the level of need of the individual, and the scope of services and supports available under the State plan HCBS benefit, the plan must: 

(1) Reflect that the setting in which the individual resides is chosen by the individual. 

(2) Reflect the individual's strengths and preferences. 

(3) Reflect clinical and support needs as identified through an assessment of functional need. 

(4) Include individually identified goals and desired outcomes. 

(5) Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals, and the providers of those services and supports, including natural supports. Natural supports cannot supplant needed paid services unless the natural supports are unpaid supports that are provided voluntarily to the individual in lieu of State plan HCBS. 

(6) Reflect risk factors and measures in place to minimize them, including Individualized backup plans. 

(7) Be understandable to the individual receiving services and supports, and the individuals important in supporting him or her. 

(8) Identify the individual and/or entity responsible for monitoring the plan. 

(9) Be finalized and agreed to in writing by the individual and signed by all individuals and providers responsible for its implementation. 

(10) Be distributed to the individual and other people involved in the plan. 

(11) Include those services, the purchase or control of which the individual elects to self-direct, meeting the requirements of [earlier section] of this subpart. 

(12) Prevent the provision of unnecessary or inappropriate care. 

(13) Other requirements as determined by the Secretary. 

... and rules for how the service plan should be drawn up:

Based on the independent assessment required in [earlier section] of this subpart, the State must develop (or approve, if the plan is developed by others) a written service plan jointly with the individual (including, for purposes of this paragraph, the individual and the individual's authorized representative if applicable). The person-centered planning process is driven by the individual. The process: 

(1) Includes people chosen by the individual. 

(2) Provides necessary information and support to ensure that the individual directs the process to the maximum extent possible, and is enabled to make informed choices and decisions. 

(3) Is timely and occurs at times and locations of convenience to the individual. 

(4) Reflects cultural considerations of the individual. 

(5) Includes strategies for solving conflict or disagreement within the process, including clear conflict-of-interest guidelines for all planning procedures. 

(6) Offers choices to the individual regarding the services and supports they receive and from whom. 

(7) Includes a method for the individual to request updates to the plan.

(8) Records the alternative home and community-based settings that were considered by the individual.

(That has got to be the greatest number of time I have had to type the word "individual" on any given day.)


I think this all sounds fairly complete, and airtight, but then I have zero experience actually living in this kind of environment.  


What do you, my readers, think? Do any of you have anything you would add, or change, to the above specifications? Without your input, I'm pretty much going to be echoing ASAN's recommendations in my comment on regulations.gov, but I'll hold off on commenting until, say, tomorrow night or Monday morning to see if I get any additional recommendations from comments here.  

Qualified Candidate Barred From Job; U.S. Government Sues Employment Agency

My heart really goes out to Jason O'Dell; he and I seem to be in similar circumstances.

He recently applied for work as a lab technician in Frederick, Maryland, using an employment agency called Randstad US. Everything had been going pretty well --- Randstad had decided that he was exceptionally well-qualified for this particular job, so they "fast-tracked" his application; the company he had applied to had also expressed interest in hiring him --- until O'Dell let it slip that he had Asperger's.

When that happened, the position he had seemed about to get seemed to evaporate. His contacts at Randstad were telling him it had "been put on hold," but really they were continuing to recruit other candidates, and eventually filled the position with someone who was not Jason O'Dell.

In response to this, the U.S. Equal Employment Opportunity Commission is suing Randstad for discrimination --- in pulling O'Dell out of consideration for employment right after he told them about his disability, they violated the Americans with Disabilities Act's prohibition against employers (or employment agencies!) discriminating against qualified people with disabilities in job application procedures, hiring, promotion, pay, training, firing or any other aspect of employment. They're asking for back pay, compensatory and punitive damages for O'Dell, and revisions to Randstad's employment policies to make the kind of discrimination O'Dell experienced Officially Against The Rules.

Here is the relevant part of the ADA:

Sec. 12112. Discrimination

(a) General rule

No covered entity ["covered entity" meaning an employer, employment agency, labor organization or joint labor-management committee] shall discriminate against a qualified individual [someone who can perform the essential functions of the job with reasonable accommodations] on the basis of disability in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment.

(b) Construction

As used in subsection (a) of this section, the term "discriminate against a qualified individual on the basis of disability" includes

(1) limiting, segregating, or classifying a job applicant or employee in a way that adversely affects the opportunities or status of such applicant or employee

... and here's a handy little page about employment law; it tells you what your rights are under the ADA, and what you can do if you think they've been violated.

The EEOC also mentions in its press release that fiscal year 2010 has been especially bad for discrimination in employment: they had 99,922 claims, of which 25,165 were disability-related. That constitutes an increase of 17.3% over the number of disability claims filed in fiscal 2009.

I hope they win their suit, and that O'Dell gets those damages ... although even more I hope he manages to get a lab job somewhere!

S. 987 Vote: More Proof that "Pro-Life" Isn't About Protecting Children

Clarissa and Anthony McCarthy (at Echidne's blog) have both written about the U.S. House of Representatives' failure to pass a bill that would help protect young girls around the world from being forced into marriage, often to much-older men who will abuse them, rape them and force them to bear children before they are full-grown.

The International Protecting Girls by Preventing Child Marriage Act of 2010, or S. 987, passed unanimously in the Senate and had lots of support in the House, to the extent that it looked like it was going to pass easily. (As it should, since it's one of civilized society's major duties to protect its most vulnerable members --- children being among them --- from exploitation and harm). But in the hours leading up to the House vote, Rep. Ileana Ros-Lehtinen (a Republican from Florida) circulated a "Dear Colleagues" letter asking fellow Republicans not to vote for the bill, but instead to vote for an alternate version of it which she authored.

The full text of that letter is reproduced at the end of this post at RH Reality Check --- the gist of it is that Rep. Ros-Lehtinen believes that S. 987, as it was written, would cost too much, and that her own alternate bill would be cheaper to implement.

According to another Representative, Rep. Betty McCollum (a Democrat from Minnesota), there's no basis for this objection; she says the bill does not appropriate any new funds whatsoever. And, indeed, in my own perusal of the bill's full text (which is short), I could find no mention of money, or of things that cost money, like establishing new agencies, task forces or research initiatives. The text of the bill seemed to me to deal only in guidelines for allocating funding that already exists.

Anyway, hours after Ros-Lehtinen sent out her letter, just before the bill was to be voted on, Republican Majority Whip Eric Cantor sent out a "Whip Alert" (a short message telling rank-and-file party members what the party line is going to be) saying this:

Leadership and Ranking Member Ros-Lehtinen OPPOSE passage of S. 987, the International Child Marriage bill, because of cost and pro-life concerns.
...
S. 987 authorizes $108 million over 5 years without sufficient oversight of the taxpayers' money. According to the Congressional Research Service, there is no available, confirmed figure on how much taxpayer funding is already being used to fight child marriage in developing countries and this bill does not address that issue.
...
There are also concerns that funding will be directed to NGOs that perform abortions and [that] efforts to combat child marriage could be usurped as a way to overturn pro-life laws.

After receiving those two messages, almost all of the House Republicans (along with nine Democrats), did indeed vote "No" on S. 987. It still received a majority of votes --- 241 ayes and 166 nays --- but it wasn't a big enough majority to pass.

This is a truly mystifying outcome; not only does the bill not call for any new spending, it also doesn't say anything about abortion. On its face, this is actually a very pro-life bill: it protects children and aims to prevent unwanted pregnancies. Even Sen. Sam Brownback*, a very, very pro-life senator, not only voted for the Senate version of this bill, but he apparently worked very hard to get it passed, so important was it to his vision of a Culture of Life.

It looks to me like they derailed this important, necessary, moral bill out of sheer orneriness; non-cooperation for its own sake, and the consequences be damned.

*"God's Senator" --- many of whose policy positions I abhor, but whom I at least respect for being consistently pro-life, and having "pro-life" mean more than just "anti-abortion." He has written, sponsored and supported lots of humanitarian-aid legislation, and he's often willing to cross party lines to get that sort of thing done. I've voted for him as a Senator before for that reason, but after this session he's leaving the Senate to become Governor of Kansas. I do not think that will go well, at all.

Justice Department Launches Investigation of JRC

Good news from Left Brain/Right Brain: In response to a letter of complaint written by disability advocate Nancy Weiss, who is co-director of the National Leadership Consortium on Developmental Disabilities and an Assistant Professor of Human Development and Family Studies at the University of Delaware, and signed by thirty-one disability organizations (including Weiss's organization, the NLCDD, TASH, the Autistic Self-Advocacy Network, and the National Disability Rights Network, but not including the Autism Society of America, which Weiss says, was contacted but refused to sign), the U.S. Department of Justice says it's opened a "routine investigation" of the infamous Judge Rotenberg Center in Canton, Massachusetts.

The investigation will seek to determine whether the JRC's practices violate Title III of the Americans with Disabilities Act, which prohibits discrimination against people because of their disabilities by any government agencies, nonprofit organizations, or private businesses that serve the public.

The initial letter of complaint that Nancy Weiss sent to the Justice Department (and also to the U.S. Department of Education, the U.S. Department of Health and Human Services, the Office on Disability within HHS, and to committees within both houses of the U.S. Congress whose areas of focus include education, and also to three international human-rights organizations: Amnesty International, Human Rights Watch and Physicians for Human Rights) spoke of the electrical shocks meted out to students every day at the Judge Rotenberg Center in broad terms as human rights violations; the language specific to the Americans with Disabilities Act and nondiscrimination appeared later, after the Justice Department responded that it may not have jurisdiction to enforce human-rights laws in a private facility, since the relevant law --- the Civil Rights of Institutionalized Persons Act --- applies only state-run institutions.

The logic in making this a claim of discrimination goes as follows:

(Quoted from Nancy Weiss's letter to the co-signers and other supporters of her September 2009 letter of complaint).

I suggested to [the Department of Justice] that they consider jurisdiction under the ADA on the basis that people with disabilities are being treated in ways that are neither legal nor would be tolerated if applied to people who do not have disabilities ... .

There's no way of knowing how long the investigation will take, but I am enormously glad the federal authorities are at least looking into it. What goes on at that "school" is nightmarish, and no living thing ought to be subjected to such treatment.

Health Care for All --- Except You, Lady!

On Sunday, the House of Representatives passed the Democrats' health-insurance reform bill, but not without some "collateral damage," to use Echidne's phrasing.

The bill that was passed contained an amendment, the Stupak-Pitts amendment (full text here), which would bar any government-sponsored health insurance from covering abortions. More than that, it would require any private insurance plans that might receive government subsidies, or be purchased by individuals receiving government subsidies, to strip abortion coverage from their publicly available plans, and put it into a separate category of coverage that people would have to buy for themselves (or get through their employer).

The amendment would remove all references to abortion coverage from the parts of the bill describing "Essential Benefits" (Title II, Subtitle C) --- i.e., coverage to be extended to everyone, whether directly through a government-run public insurance option or indirectly through government subsidies or exchange programs intended to make private or employer-based insurance more generally accessible --- and add this text at the end of Title II (Protections and Standards for Qualified Health Benefits Plans):

SEC. 264. LIMITATION ON ABORTION FUNDING.

a) IN GENERAL. --- No funds authorized under this Act (or an amendment made by this Act) may be used to pay for any abortion or to cover any part of the costs of any health plan that includes coverage of abortion, except in the case where a woman suffers from a physical disorder, physical injury, or physical illness that would, as certified by a physician, place the woman in danger of death unless an abortion is performed, including a life-endangering physical condition caused by or arising from the pregnancy itself, or unless the pregnancy is the results of an act of rape or incest.

b) CONSTRUCTION ON OPTION TO PURCHASE SEPARATE SUPPLEMENTAL COVERAGE OR PLAN. --- Nothing in this section shall be construed as prohibiting any non-federal entity (including an individual or a State or local government) from purchasing separate supplemental coverage for abortions for which funding is prohibited under this section, or a plan that includes coverage for such abortions, so long as ---

1. such coverage or plan is paid for entirely using only funds not authorized or appropriated by this Act; and
2. such coverage or plan is not purchased using matching funds required for a federally subsidized program, including a State's or locality's contribution of Medicaid matching funds.

c) CONSTRUCTION ON OPTION TO OFFER SEPARATE SUPPLEMENTAL COVERAGE OR PLAN. --- Notwithstanding section 303(b), nothing in this section shall restrict any [Qualified Health Benefit Plan] offering entity from offering separate supplemental coverage for abortions for which funding is prohibited under this section, or a plan that includes such abortions, so long as ---

1. premiums for such separate supplemental coverage or plan are paid for entirely with funds not not authorized or appropriated by this Act;
2. administrative costs and all services offered through such supplemental coverage or plan are paid for using only premiums collected for such coverage or plan; and
3. any nonfederal QHBP offering entity that offers a plan that includes coverage for abortions for which funding is prohibited under this section also offers a plan that is identical in every respect except that it does not cover abortions for which funding is prohibited under this section.

As Ezra Klein, Jodi Jacobson, and Jenn all point out, this will seriously aggravate the systemic inequality of access that already pervades both health care in general, and abortion and contraception in particular, in this country.

The Hyde amendment already barred women on Medicaid, women in (federal) prison, federal employees, and military personnel from receiving insurance coverage for abortion, and now the Stupak amendment will ensure that lots of other categories of women join them.

Robin Marty also points out that the amendment --- containing as it does such restrictive language surrounding when publicly-funded abortions are permissible --- could have the unintended consequence of forcing women who've miscarried to go through with their already-aborted pregnancies, because removing the dead fetus would technically be an abortion, and thus ineligible for public funding (or --- to reiterate, because I think this is the most invasive aspect of this law --- private funding by any insurance plan participating in a public insurance-exchange program or open to people receiving federal subsidies):

Hospitals and doctors in general do not have terminology to classify a difference between the termination of a live pregnancy and one in which the fetus has already died. To them, a D&C is a D&C, regardless of the state of the "conception materials" removed. Regardless of how many times I made sure to mention to the staff, either for the sake of my sanity or to spare me some sort of imagined shame, that I was ridding myself of my "dead fetus," to them it was all the same.

I also could not fail to notice the amendment's omission of mental illnesses from the list of acceptably serious health problems sufficient to justify terminating a pregnancy with federal assistance.

That omission is interesting to me, because pregnancies resulting from rape and incest are on the okay-to-abort list, even though such pregnancies may not be particularly dangerous or life-threatening. You might think that Rep. Stupak included those categories out of respect for the intense mental and emotional suffering a woman (or girl) is likely to feel, giving birth to her attacker's child, but then you wonder, if he really is so concerned about suffering, where's his consideration for women suffering suicidal depression, or terrifying psychotic breaks? Many psychiatric medications can't be taken during pregnancy, after all, and depression in particular can worsen dramatically as soon as the depressed pregnant woman gives birth.

Those incongruities suggest to me that either Rep. Stupak is really ill-informed about mental illness, pregnancy and women's health (which wouldn't surprise me --- Rep. Stupak is not a doctor), or he ascribes to the distressingly common, misogynistic view that women abort pregnancies on a whim, and that female sexuality, decoupled from marriage and socially-sanctioned procreation, is an inherently destabilizing force that must be contained.

If restricting abortion is not really about fetal life, but about female sexual agency, as Amanda Marcotte frequently --- and quite persuasively --- argues, then it makes sense that abortion bans almost always contain rape and/or incest exceptions. If the sex wasn't chosen, the woman isn't a threat; she's a pitiable victim. In the usual "elective abortion" narrative, a woman who chooses to have sex is obliged to accept the "consequences" of her decision --- i.e., pregnancy --- and any attempt by her to exert further control over her fate, say, by taking emergency contraception or, if she should become pregnant anyway, having an abortion, is an overreach; she sins, she cheats, she gets away with too much. Her impunity makes people nervous. The victim of rape or incest is not "overreaching" in this way; she's just trying to get back to normal.

Ack! I Forgot to Blog Against Disablism Yesterday!

Yesterday was the first of May, which had two immediate associations for me: May baskets and "Wolverine." But it was also Blogging Against Disablism Day, which I hadn't realized until I got on the Internet last night.

I've never participated in one of these mass blogging days before, since I usually can't think of anything to say on the topic when they're called, but this time I've got some disablism against which to blog.

First, there's the sidelining of the Community Choice Act, as ABFH has also mentioned in her BADD post. The Community Choice Act (H.R. 1670, S. 683) would amend Title XIX of the Social Security Act to remove what ADAPT terms the "heavy institutional bias" of its coverage rules for long-term care.

The act would revise Section 1902(a)(10)(D) of the Social Security Act (which currently just says that a state plan for medical assistance --- like, say, Medicaid --- should "provide for the inclusion of home health services for any individual who, under the State plan, is entitled to nursing facility services") to include "community-based attendant services and supports" as another alternative (besides the in-home care already specified) to institutionalization. It would also add a section detailing the regulation and oversight of such programs. (One of the features of that proposed section that intrigues me the most is its call for each state to create a Development and Implementation Council --- made up primarily of elderly and disabled people themselves --- to make sure the program works as it should).

Since one of the Obama administration's biggest priorities has been health-care reform, and since strengthening Medicaid had already been part of that agenda, you'd think the Community Choice Act would be part of that. Yet when a delegation of ten ADAPT activists met with a group of officials including Nancy-Ann De Parle, Director of the White House Office of Health Reform; Jeff Crowley, Director of the Office of National AIDS Policy and disability-policy advisor; Henry Claypool, Director of the Office of Disability in Health and Human Services; and Mike Hash, coordinator of joint White House-Department of Health and Human Services reform efforts, the activists were told that the Community Choice Act was not a priority for the current wave of reforms.

From the ADAPT Action Report of April 27th:

The administration stated that its only commitment currently is to extend insurance to the people who are uninsured, and that the people in nursing homes and institutions would need to continue to wait until an unspecified time in the future when it is proven that the health care reform worked.

Hearing that, 500 ADAPT members gathered outside the White House, chanting and holding signs and banners. Some handcuffed themselves to the fence, and all were there in defiance of a police order not to protest on the sidewalk or near the fence.

91 protesters were arrested.

On the following day, the protest was moved to Capitol Hill, where activists blocked off Independence and Constitution Avenues and crawled up the Capitol steps.

99 were arrested on that day.

On the 29th, ADAPT and SEIU held a joint rally in Upper Senate Park, at which Community Choice Act sponsor Sen. Tom Harkin spoke.

(All photos by Tom Olin, available online here)

I also have an example of disablism at the local level, in the publicity campaign for a bill that's been kicking around the Kansas legislature for a few months now.

Dubbed "Kate's Law" after Olathe veterinarian and Kansas Coalition for Autism Legislation founder Michael Wasmer's young daughter, the Accessing Autism Services Bill (H. B. 2367, S. B. 12) would require health-insurance policies to cover autism treatments, particularly ABA, which had previously been denied coverage under a lot of plans due to its "experimental" status. Currently, the House version of the bill is pretty much dead in the water, having failed to win enough votes to be pulled out of committee and into general debate. The Senate version was tabled late in January; Senate Financial Institutions and Insurance Committee chairwoman Ruth Teichman cited the bad economy and a lack of information about the potential economic effects of expanding insurance coverage.

I have no problem with the law itself, and, indeed, think that whatever services people decide they need should be accessible to them. No, my gripe is with the oft-raised specter of Dire Consequences if any autistic child grows up without having had extensive behavioral therapy.

Here's an example of such scaremongering, from an April 28 Kansas City Star article:

Autism is a developmental disability that affects 1 in 150 children, typically by age 3. Autistic children have problems making eye contact. Language skills are stunted. Interpersonal relationships become difficult. Left untreated, autism can affect a person's educational and employment opportunities.

There's no cure, but early intervention can teach autistic children the skills they need to lead productive lives.

Without therapy, many severely autistic people end up in institutions or relying on the government for help. The Autism Society of America, however, estimates that two-thirds of the cost of lifelong care for an autistic person can be eliminated through early therapy.

This is disablist rhetoric for a couple of reasons. The first reason should be fairly obvious: the article is saying that, without "treatment" of a certain type and duration, an autistic person's life will not be "productive." (In an aggressively capitalist, bottom-line-obsessed society like ours, such a prediction carries the additional connotation of moral worthlessness). The person is doomed to grow up a "useless eater," costing his family, state and country money.

Besides assuming the worst possible outcome, this line of argument also objectifies the autistic person. Nowhere are hir thoughts, feelings or desires mentioned, and hir (squandered) potential is alluded to only in bare economic terms. Hir life is discussed entirely in terms of its financial impact on the state. The moral imperative presented in this argument therefore has nothing to do with the autistic person hirself, but instead deals with minimizing the economic damage this person does simply by existing as ze is.

Finally, there's the disablism inherent in a political and economic system in which advocacy groups feel like they have to prophesy doom to get assistance from the government. Instead of saying, "Hey, some families want this, can we help them get it?" advocacy groups like Autism Speaks and the Kansas Coalition for Autism Legislation feel they have to say, "Without this, one in every 166 150 100 children in preschool now will grow up to be a DROOLING VEGETABLE and bankrupt their family! The economy will collapse, and there'll be RIOTING IN THE STREETS!! FUND THIS NOW!!!!"