Mastering the 504 Plan

[This is an encore blog I posted several years back-- I wanted to make sure to review this annually.]

It is that time of year—parents start thinking about Spring Break activities, vacations and developing a new strategy for dealing with teachers, administrators and various other academic interveners, disguised as well meaning and caring purveyors of public school education for the next school year. That's right-- Special Education Meeting [Student Support, Team meeting, Committee on Special Education, Medical Needs Group-- it goes by a variety of names]--Season.

So here is my Five Step Survival Guide to special education advocacy:

1.Have a Building Based Plan. Many districts require special education services to go through a central office. If you can avoid this, by all means do. These people do not know you child, and only have his/her psychological testing, social work evaluations to go by. (Have you ever wondered how you would be described in an evaluation done by a perfect stranger asking you things you don’t tell you best friend?) While this snapshot may be clinically acceptable, it is only a snapshot—you child needs should be based on more than that. If you cannot avoid going through a central committee, still pursue an unofficial meeting with the building based team leader—it may be the speech, OT or PT. In the worst-case scenarios, someone is usually the carryover year to year, and is the de facto coordinator of special services.

2.Know your Legal Rights. Well meaning administrators and teachers tell parents so much bad, subjective and completely wrong information, its scary. Parents have been mandated to medicate children, allow aversive therapies (electro-shock), deny medication (insulin), etc. that is critical parents have a copy of the IDEA law, the 504 section of the ADA, and the mandatory guide to special education services, which is required (but seldom seen). Learn the appeals process, the grievance process, etc.

3.Know Your Legal Options. There are lots of treatments, therapies and services that are available outside of the school district. Some health departments’ offer home based services to children at the pre-school stage, or children with serious medical conditions. Many health insurance plans cover speech, OT, PT. There are also services through the Office of Mental Retardation and Developmental Disabilities for children with less severe issues (respite, summer camp, special play groups, equipment rental, etc.) If you have to try to wrangle services form the school district, there are disability advocates through centers for independent living (CIL’s), VESID and other local disability rights organizations; let you finger do the walking through the Yellow Pages.

4.Get a Second Opinion. You child’s kindergarten teacher may know finger paints and nursery rhymes, but that does not apply to disabilities. Most teachers are not required to take any classes about disabilities, or any cognitive impairment. Those fortunate enough to be at a school with a minor or electives have a limited selection, and little or no practicum. Always get a psychological evaluation outside of your child’s home school. This local person never can give a truly unbiased assessment, when they have the feedback of peers, teachers, and building neighbors.

5.Develop Your Own Plan. The Internet had leveled the playing field between parents and practioners. Anything you want to know about any issues, illness or disability is yours for the reading. Gather information, go the libraries and support groups, to bounce ideas around. Use parenting experience to document your child’s strengths, weaknesses, responses to stimuli, etc. This information should be distilled to a one page report to give to new teachers; share the long various with the building based special education/support services team.

Not everyone will value your level of preparation and knowing what you want, but one person will benefit—your child.

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There are also other resources available online: Terry Mauro has some good sources, with links to other state standards.

Other conditions are now protected under the ADA and 504 Plans, including juvenile arthritis, diabetes, learning disabilities and other medical conditions that impact the learning process.

Autism Updates

There is a good deal of new news on the autism spectrum front. There is info on childhood autism, as well as some medical professionals developing some insight on autism, based upon new technology such as YouTube.

New York State is also on the ball-- in response to pressure from parents and advocates. The New York State Office of Mental Health held hearings on Autism Spectrum disorders last week. The room was so packed, the stories and testimonies so vivid, that the hearings have been extended. In addition, a proposal, Johnathan's Law, was presented. This is a bill (for access to care information) is based upon the tragedy of a young man with autism who was killed by personal 'care' attendants. ( I have attached the story below.)

Here are other hyperlinks:

http://www.troyrecord.com/site/news.cfm?newsid=18042693&BRD=1170&PAG=461&dept_id=7021&rfi=6

http://www.democratandchronicle.com/apps/pbcs.dll/article?AID=/20070306/NEWS01/703060316/1002/NEWS


http://timesunion.com/AspStories/storyprint.asp?StoryID=569247

http://www.timesunion.com/AspStories/story.asp?storyID=568457&category=OPINION&newsdate=3/4/2007
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Jonathan Carey's parents testify at Senate hearing
Updated: 3/6/2007 7:17 AMBy: Ryan Peterson, Capital News 9

Michael Carey said, "We're talking corruption, serious corruption. Webelieve someone had political connections somewhere. This is disgusting,and it's got to stop."Jonathan Carey was severely autistic and could not speak. But the 13-year-old's voice was heard loud and clear as his parents, Michael and Lisa, testified before the Senate Committee on Mental Health and Developmental Disabilities. Lisa Carey said, "Our battle for changes to the current mental healthcare system began long ago. In 2004, our son Jonathan, then 11 years old, was abused and neglected at the Anderson School in Dutchess County.The family is proposing "Jonathan's Law," which calls for stifferpenalties for those who endanger the welfare of the disabled and willprovide parents and guardians access to all records pertaining to their children. At the Anderson School, the Careys discovered their son living in deplorable conditions and learned of a drastic change in his care program -- both of which, the family said, they would have known about with better access to Jonathan's records.

Lisa Carey said, "The withholding of records from families allows state agencies to conceal the evidence of abuse, neglect and broken laws,which have been established to protect our most vulnerable population.This must be stopped immediately."Senator Thomas Libous of Binghamton said, "Right now we've learned that this state does a miserable job with children with autism and has to do a better job."Jonathan died while in the care of two aides at a different center --O.D. Heck Developmental Center in Schenectady County. Police said thatan illegal restraint was used on Jonathan by a state aide. Even worse, according to police, was that the aides didn't realize something waswrong until 90 minutes later, when it was too late.

Governor Spitzer's nominee for commissioner of the Office of Mental Retardation and Developmental Disabilities said things will change underher watch. Acting Commissioner Diana Jones Ritter said, "I cannot defend theactions that occurred prior to me. But I can assure you that mydirection to my staff will be to listen carefully and respond adequately. I'll give you the commitment that our doors will be open and we will look for ways to provide information to parents."Legislators said Jonathan's Law is a priority and they hope to have adraft ready for a vote within the next two weeks. The Assembly meets to discuss the state's handling of autistic children on Thursday.

The World of Autism

There have been a number of articles and updates on the Autism Spectrum Front. Check out the latest research on the genetic level http://mail.rochestercdr.org/exchweb/bin/redir.asp?URL=http://news.bbc.co.uk/2/low/health/6369347.stm

This is progress of a sort, but not really helpful in the short term for parents, family and people with the spectrum. Gene links--genetic markers-- how does that help someone know not to go out a window, fire burns or how to look someone in the eyes when they talk? (Sigh)

60 Minutes also did a piece on autism research, which I didn't get to see. But it looks like more science experiments on people with disabilities. Check it out, and see what you think:
www.cbsnews.com/stories/1998/07/08/60minutes/main13502.shtml
A video and a text version of the story will be posted there as well after it airs.

There is also some good news-- of a sort. A study that being a sibling of a child or children with a disability does not psychologically scar you for life. http://www.nytimes.com/2007/02/18/magazine/18autistic.t.html?ex=1172466000&en=50b0fa56f2c82f04&ei=5065&partner=MYWAY

That was the old rationale for putting kids 'in the home'-- protect the abled bodied children. Now research shows it doesn't hurt, sometimes it makes a more sensitive, caring sibling, and sometimes sibs end of stressed and neurotic.

A mixed bag-- just like being anyone's sibling...