The Meaningful Struggle

New Jersey's Adults with Autism Task Force is sponsoring four public fora to get input from Jerseyans about the needs of adults on the autism spectrum:

Charged with studying and evaluating the needs of adults with autism, forums are being held to gather information on issues such as job training and placement, housing and long-term care needs.

This information from the public will be used to develop recommendations designed to support and meet the needs of adults with autism who are residents of New Jersey. The recommendations will comprise the basis for a comprehensive report which the task force shall present to Governor Jon S. Corzine and the New Jersey Legislature in June 2009.

The public fora are meeting over the upcoming week; information about dates, times, and locations can be found here. Individuals who are unable to attend any of the fora can submit written testimony to deborah.cohen@dhs.state.nj.us by March 21, 2009.

You can probably guess what the testimony I'm working on will be about based on what I write (over and over) here and have noted in testimony to the Interagency Autism Coordinating Committee---about the pressing need for housing, employment (including the need for training, job opportunities, and support staff for those who require it), transportation, and supports and services at appropriate levels throughout an individual's lifespan.

Writing about Charlie's needs is something I've had way too much practice in, and yet I often find myself returning to the same internal conflict. I have a pressing need to indicate the bare truth, the simple reality of how Charlie struggles and how an appropriate education, services, and staff can turn those struggles around. It's a meaningful struggle, Jim and I believe, for us as well as Charlie and even as we seek to convey that there's pain and sadness, we always have to emphasize how good we know life with Charlie is, and how desolate life would be without my strong-shouldered boy. It's a delicate balance to convey that there are tough days and, on those same days, you've having so much fun and everything is so full of love pure and simple that you feel your heart might burst.

And yet, "accepting" that one's child is on the autism spectrum---acknowledging that one's child has a disability----gets equated with having "blinders" on, in a March 13th op-ed by Dr. Jon Poling. Dr. Poling is the father of Hannah Poling, whose "'pre-existing mitochondrial disorder" was "conceded" to have been "'aggravated' by her shots" in March of 2008, just over two years ago. Such parents who have "gone down the dead end path to autism acceptance, without search for cause or cure" (guess I get cast in this group, though please read what's said here too)---such parents are compared to those doctors who "still fail to even accept the increasing autism rate as real, rather than their own better diagnosis" and who think that "vaccines should be exonerated in the autism epidemic."

Disputes about causes, treatments, definitions, and much more of autism are sure to rage on. But for every time we bring these up (as I am here), what if we talked too about what individuals on the spectrum need and need now, in a very specific and concrete sense? Sure we can talk abut needing a cure----for failing school programs that are understaffed and simply unprepared for students on all parts of the autism spectrum; for a lack of good options for housing for adults with disabilities; for a positive deficit of jobs for adults with disabilities and for adequate protections against abuses by employers; for ending the use of seclusion rooms, restraints and aversives.

About the last topic, here's an email about something you can do to make real, and really needed, change.

The Government Accountability Office (GAO), Congress' investigative arm, is seeking information about the use of restraints, seclusion, and aversives in day school programs. The GAO will be developing a report in preparation for hearings to be held by House Education Committee Chairman George Miller on the issue. Day schools are schools that are not residential. The GAO is interested in all kinds of cases, civil and criminal, cases in court and cases in due process/other administrative hearings. In addition, COPAA is collecting information about situations that didn't involve court or hearings.

CATEGORY ONE: Cases, Hearings, Criminal and Civil
Please provide the following information to Christine A. Hodakievic, GAO Senior Special Agent, email: HodakievicC@gao.gov. We would also appreciate a copy to us at jessica@copaa.org but that is not essential.

1. Information about any Court case, due process hearing or other administrative hearing involving restraints, seclusion, or aversives in a day school program. It does not have to be an IDEA case. It can be any kind of case, such as Constitutional, wrongful death or other tort action, 504, or any other kind of case/hearing. It can be a litigated case or a case that was filed and settled or otherwise concluded.

2. Information about any Criminal Matter involving restraint, seclusion, or aversives in a school. This can be a criminal case that went to a trial, a criminal case resolved without a trial, an indictment, an information, arrest, or any other kind of criminal matter. (Some of you have represented children who were witnesses in criminal cases against school staff who used aversive interventions. The GAO would be interested in these criminal cases, as well as others.)

3. Information about complaints filed with a State Department of Education about restraints, seclusion, or aversives in a day school program.

[****INFO ADDED SINCE ORIGINAL E-MAIL*****]
In order to ease the burden on the GAO, and to make the reporting even easier, Council of Parent Attorneys & Advocates, Inc. (COPAA) has developed [a] reporting form. Please submit any information about hearings, litigation, criminal or civil cases, state complaints, or other legal proceedings involving restraints, seclusion, or aversives. The information will then be sent to the GAO twice a week compiled together in a single Excel spreadsheet. Your information WILL go to the GAO, but it will simply be in a more easy to use form, and the GAO officer will not be facing a mailbox crammed with email.

This will allow the GAO to concentrate on the substance of its work instead of being inundated with email. If you wish to send your reports directly to the GAO, or your organization has instructed you to do so, we do not mean to interfere with those instructions. But emails are circulating widely on the internet via various yahoo groups giving contact information for the GAO, and you may find it more fruitful to use COPAA's reporting form instead. If you have a choice, we'd suggest using COPAA's form.

To complete the reporting form about hearings, civil cases, criminal cases, litigation, state complaints, or other legal proceedings involving the use of restraints, seclusion, or aversives on children with disabilities, click on Legal Report Form.

If that does not work, then the full link is:

http://www.surveymonkey.com/s.aspx?sm=w1TBGjlJhZUsC9Nmz2HwnA_3d_3d

Fill out only the information you wish to complete. If, due to client confidentiality concerns, you can only fill in your name, email address, state, and provide a very general description of the events, then do so. On the other hand, if you can provide a fuller description, we would appreciate it.
*****END OF ADDED INFO*****
In your email to the GAO, it would be very helpful to describe the case, provide any identifying information such as a citation, describe what happened to the child, what happened in the case/hearing/complaint, and any other pertinent information. If you know whether the case is still pending or whether civil litigation has ended, please add that. The GAO would also appreciate receiving copies of complaints, hearing notices, pleadings, briefs, and decisions/orders, if you would like to provide them (its optional). Obviously, if you have a big case file, choose the most important documents. If you filed a complaint with your State Department of Education, but didn't file a court case or due process, please be very clear about that in your email to the GAO. It helps them sort out what they are getting, since they will be receiving many many emails.

CATEGORY 2: Other Situations--no filed case or hearing.
COPAA is also seeking information about any other situations in which children were subject to restraints, seclusion, or aversives but a case or due process/administrative hearing was not filed. We have set up a computerized survey form for you to report it. We will be sharing this information with the GAO and as otherwise explained in the survey. This computerized form simply allows us to collect all of the information together and sort it so that we can do this quickly. If you wish to complete the survey, click here.
(If the link doesn't work, the full link is

http://www.surveymonkey.com/s.aspx?sm=kbizom_2bCU27wrYCCRv7R7w_3d_3d

IF YOU HAVE A SITUATION IN WHICH A COURT CASE, HEARING, CRIMINAL COMPLAINT, or other litigation, court filing, or case ensued, please report it directly to the GAO as stated in Category 1. Please use the COPAA survey form only for other situations in which restraints, seclusion, or aversives were used.

Thank you and feel free to contact us with any other questions. Again, please feel free to repost or otherwise share this information with others.

Jessica Butler
Congressional Affairs Co-Chair
Council of Parent Attorneys & Advocates, Inc. (COPAA)
A National Voice for Special Education Rights and Advocacy
www.copaa.org
email: jessica@copaa.org