Samantha Pierce

Late night last minute preparations for a CSE meeting for one of the children in the morning. I already know what I'm going to say and I already have information at hand to back me up. New York state education regulations as written and implemented tend to throw stumbling blocks in the paths of students with IEP/504 Plans. A student with an IEP/504 Plan that includes an extended time testing accommodation can end up enduring 12 hours of testing to complete Regents exams if they have two exams scheduled on the same day. New York doesn't reschedule these exams to accommodate students with IEP/504 Plans. One option is for student to take one of the exams months later during one of the other allowed testing period in January, June, and August. The other option is to not take one of the exams at all. I'm not a fan of any of those options for my children or anyone else's. So I've got my copy of the full text of IDEA, all 162 pages of it. Download your copy to...

Repost from Autism Attitude: ABLE 2.0 In 2014 Congress passed the ABLE Act enabling families of disabled children to save for long term care expenses for their children without penalty. ABLE qualifying accounts are tax exempt and do not count against individuals when applying to government programs. As expected the ABLE Act 2014 comes with some strings attached. There are saving and spending limits for qualifying accounts as well as penalties for funds used for unapproved expenses. Now a bipartisan update to the original 2014 version of the ABLE Act, called ABLE 2.0 is in the works. The idea of ABLE 2.0 is to transform the current ABLE Act 2014 into what would essentially be government run estate planning. The ABLE 2.0 package includes three bills. The ABLE to Work Act allows individuals and families to save more money — up to the federal poverty level — in their accounts if the beneficiary works and earns income. The ABLE Financial Planning Act allows fa...

Some big news around here the last few days is the story of a Syracuse City School District (SCSD) substitute teacher stabbed breaking up a fight between students in local high school. People are predictably outraged saying all manner of vile things about not only the students involved but all students in the district. Even Onondaga County District Attorney William Fitzpatrick has weighed in on the matter declaring the school district must drop its current approach to discipline. The SCSD Code of Conduct has been a hot topic of late. It frustrates families, students, and staff. There is plenty of room for improvement. But people seem to have forgotten, or don’t care, how we got to this point. Families first recognized the problem with discipline in the schools. The Assurance of Discontinuance details just how bad the problem was. High rates of suspensions of students, minority students disproportionately suspended, failure to notify families about referrals and suspension...

A Michigan special education teacher has filed suit alleging that she was wrongfully terminated for bringing sexual harassment by her special education students to the attention of administrators at Bay City Western High School. Teacher: Special ed students sexually harassed me, then I got fired Melissa Sawicki, 36, filed a lawsuit in US District Court in Bay City in September, alleging sexual discrimination and retaliation for protected activity on behalf of Bay City Public Schools and the district’s board of education,  MLive.com reported  on Tuesday.   Sawicki claims special education students began making crude and lascivious comments to her — some even directing obscene gestures to her — shortly after she started her job in the district at Bay City Western High School in 2013. Two, no three, things went wrong if Sawicki’s allegations are proven to be true. First this teacher was not adequately prepared for what she would face in her classrooms during her teac...

Arresting children with disabilities and learning disorders when the adults around them fail to meet the children’s needs is a triumph of poor planning and mediocrity. The latest example of this, that we know about, occurred in a school in Dallas, Texas . April Obin says her son has attention-deficit/hyperactivity disorder (ADHD), and tends to disrupt class at Gabe P. Allen Elementary School several times a week. But he has trained counselors that help him cope with the mood disorder.   On May 9, Obin says her son had an episode that turned violent and he began to bang his head against the wall.   Obin's attorney, Amar Dhillon, says the school was having standardized testing that day. The boy's counselor wasn't available, so they called his mother in for assistance. Now you might be wondering why there was no one else at the school able to help April Obin’s son without the situation allegedly deteriorating the way it did. I know I am. Did anyone think, hmm...

Re-posting from my other day job. All the Parenting Hats Some days it feels like being a parent requires me to be a general education specialist, a special education expert, a psychologist, a neurologist and neuroscientist, a geneticist, an education law specialist, a diplomat, and a hunting dog all at the same time. It is exhausting. But it’s what you do. Will there be a time when I’m not going to advocate for my children and others like them? When I’m dead maybe. My kids want to go to college. That means it’s my job to make sure everyone does their job to give my children that opportunity. Sometimes that means holding my children to a higher standard than others have for them. Sometimes that means cutting them some slack. It’s a delicate balance that requires knowing the child in question and what best motivates them. ​ Mostly it requires being present and aware of my child and their needs. It means setting in my mind that they can achieve their goals and working alongside ...

The paperwork necessary to "prove" the the existence of a life long condition times two. The Medicaid system is byzantine. There is no way around that fact. Issues with Medicaid have plagued those of us living with disability for decades. But it’s nice to see that others are beginning to notice problems with Medicaid to wit, “ The new healthcare bill could worsen the stigma of special education .” Of concern here is the possibility of a loss of $4 billion over the next 10 years earmarked for schools to help children with special needs. Without Medicaid, support services as well as educational outcomes for children with disabilities may suffer. In a  report from January  of this year, AASA, the School Superintendents Association, made clear how dire the situation could get. Health and wellness, therapy, and nursing services will be on the chopping block, as will the jobs of staff whose salaries are paid either in part or in full by Medicaid reimbursements. ...

I appreciated the opportunity to take part in the live broadcast town hall on Monday, May 15, 2017 with my congressman John Katko. The event wasn’t earth shattering or game changing. It was a good start for a new way to do public dialogue with elected officials. I’d love to get state and local elected officials in that kind of format. Here are the questions I had prepared for the evening but did not get a chance to ask. (News coverage here , here , and here . Plus protest coverage here , here , and here .) Medicaid Medicaid fraud prevention measures do a poor job of preventing fraud. Instead they make it harder for people who need services to get them. How would you address this problem at the federal level? Medicaid reimbursements to service providers are notoriously low. This leaves people with limited options for care. It is a perennial problem for people with disabilities who need specialized care. Central New Yorkers are currently faced with a limited number of provi...

April rolls around every year and every year for autistic folks, their families, and friends we become the center of a media frenzy. Some welcome this some not so much. Lost in the hubbub though is the fact that life is precious and beautiful especially when me make conscious decisions to make it so for our autistic selves, family, and friends.

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Cross posted at NeuroDiversity Consulting blog . I'm really torn about this, Top Five Reasons You Should Never Piss Off an Autism Mom . On one hand it illustrates some of the unpleasantness of parenting autistic individuals. You and your children are constantly subjected to overly judgmental remarks from strangers, family and friends, you and your child are constantly struggling to understand each other, as a parent you are already on edge and consumed with guilt and fear that you are not doing enough for your loved one, you fear that the comments that you are not a good enough parent are true. At the same time I feel we owe more to our children than the caricature of the angry ill tempered shrew that this list presents. Yes the lives we live as parents of autistic individuals are hard but our children are worth all of the struggle. We fight because our children are worth fighting for. Parents need to take care to share that message rather than the message that their children a...

What I've been up to of late. NeuroDiversity Consulting LLC Stop by for a visit and let us know what you think.

The conversation continues. This latest installment I call, What Happens To Disabled Adults When Parent voices Are Considered The Only Ones Worth Listening To? Nothing good . I could not get a single solitary service from either of these places. The CIL barely knew what autism was; they dealt mostly in physical disabilities and they were less than helpful in filling out forms or narrowing choices down for housing or anything -- things I desperately need help with. And the ARC? Oh god, the ARC. Let me tell you what they said: “we usually deal with clients' parents.” I was there because I very suddenly had no parental or other net. But they wouldn't help me, even a little, because my parents were very much not in the picture. They told me that I was too smart for most of their stuff, but they wouldn't help even a little with anything else because they interface with parents rather than clients. In those six months, I did not fall through the cracks -- I was shoved into t...

There's an interesting dialogue going on at The Thinking Person's Guide to Autism between a autism parent advocate and an autistic self advocate. The Self-Advocate/Parent Dialogues, Day One: Zoe The Self-Advocate/Parent Dialogues, Day Two: Robert Rummel-Hudson Parents and self advocates are often at odds within the autism community each seeing the other as having entirely different agendas. For my part as a parent of autistic children I see my job as being to raise responsible autistic adults. As a parent advocate it's my job to educate the people around myself and my children about the need to value and respect the voices of my children and those like them. Parent advocates and self advocates need to figure out how to be on the same side otherwise society will eat both groups alive, so to speak. Update: Part three of this conversation is up, The Self-Advocate/Parent Dialogues, Day Three: Ari Ne'eman

What the diabled have to say about themselves, Not Dead Yet ABOUT NOT DEAD YET Since 1983, many people with disabilities have opposed the assisted suicide and euthanasia movement. Though often described as compassionate, legalized medical killing is really about a deadly double standard for people with severe disabilities, including both conditions that are labeled terminal and those that are not. Not Dead Yet was founded on April 27,1996, shortly after Jack Kevorkian was acquitted in the assisted suicides of two women with non-terminal disabilities. In a 1997 Supreme Court rally, the outcry of 500 people with disabilities chanting "Not Dead Yet" was heard around the world. Since then, eleven other national disability rights groups have joined NDY in opposing legalized assisted suicide, chapters have taken action in over 30 states, and we helped put Jack Kevorkian behind bars in 1999. In the 2003-2005 fight to save Terri Schiavo, twenty-five national disability groups j...

The bible says that there is nothing new under the sun. Now ain't that the truth. Virginia lawmaker Bob Marshall seems to be channeling Jesus' disciples from a couple thousand years ago and not in a good way. " The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children." "In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There's a special punishment Christians would suggest." Marshall has since tried to back away from and clarify his statement. But where have I heard that kind of thinking before, that disability must be the result of someone's sin? Ah here we are, 1As he passed by, he saw a man blind from birth. 2And his disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" 3Jesus answered, "It was ...