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Thursday
May092013

Proposed Changes to the NJ Special Education Regulations

The proposed special education regulations contain changes that, if implemented, would greatly limit parental participation in the IEP process and negatively impact the timely provision of appropriate services for students with disabilities. We families of special education students desperately need your help to raise awareness of these proposed special education regulations and stop them from being approve.  Can we count on you? 
 
 
The following is the link to the NJEA Stakeholders "talking points" -
http://njea.org/njea-media/pdf/SpecialEdTeleconference_Talking_Points.pdf?1367582972368

Below, I have pasted a summary developed by Renay Zamloot (Non-Attorney Education Advocate) and her colleague, Martha Brecher, to provide information on areas not covered by the document referenced above. Number 8 is no longer valid, as the state eliminated this one in its latest proposal.


We are providing the following “talking points” for you to consider when generating your public testimonies. 

1. N.J.A.C. 6A:14-2.5(C)1 – This section has been completely eliminated in the State’s proposal. This is the section that explains the process for requesting an independent evaluation in an area not assessed as part of an initial evaluation or reevaluation. Rather than simply eliminate the provision, the regulation should make clear that a parent can request an independent evaluation in an area not previously assessed by the district and that the district does not have the right to conduct its own evaluation prior to considering the parental request.

2. N.J.A.C. 6A:14-3.2(a) - The proposal under this section would allow for "teachers, and any other licensed staff member with appropriate knowledge about special education requirements, services and programs available for students with disabilities" to serve as Case Managers on Child Study Teams. This is a bad idea because teachers and other staff members have responsibilities that may interfere with their ability to effectively manage a child's case and could interfere with their other roles and responsibilities within the school district. 

3. N.J.A.C. 6A:14-3.5(a), 6A: 14-3.6(c) & 6A:14-3.8(f) - The proposal under these sections would allow school districts to provide parents with evaluation reports and documentation of eligibility at least 5 calendar days prior to the meeting instead of the current 10 days in advance. This is a bad idea because 5 calendar days would not afford parents sufficient time to review and understand the evaluation results and would greatly restrict their ability to consult with school district employees who prepared the evaluation reports and other professionals if necessary. Additionally, part of the 5 calendar days could fall on a weekend, further restricting a parent's ability to contact these professionals. Finally, many parents would have no other choice but to stop the process after the eligibility determination meeting and request another meeting to develop the IEP to allow them sufficient time to obtain the information they require to participate in the IEP process as equal members of the decision making team. This would require additional meetings of IEP Teams, an unintended, but easily foreseen consequence of these rule changes.

4. N.J.A.C. 6A:14-3.7(d) - The State proposes to modify the regulation permitting the amendment of an IEP without an IEP meeting by adopting the federal regulation’s language. Nonetheless, this regulation should continue to require the written consent of the parent and notice to parents of the right to refuse to consent to the amendment. Additionally, the regulation should continue to contain the timeframe within which the district must provide the amendment to parents.

5. N.J.A.C. 6A:14-3.7(e)13 - The proposal under this section would eliminate the need for a "person responsible to serve as a liaison to postsecondary resources and make referrals to the resources as appropriate" to participate in the IEP meeting of a student of transition age (age 16 or younger, if determined appropriate by the IEP team). This is inconsistent with another NJ statute that requires that all school districts with grades nine through 12 designate at least one staff member to serve as a “disability services resource for parents.” That staff member “must be able to demonstrate competency in the various services available through State agencies that serve persons with disabilities, and…be able to assist parents and students in navigating the adult disability system and in preparing for a smooth transition from the school system to State adult disability services.” These services are critical to the purposes of IDEA, as well: to prepare students with disabilities for independent living, postsecondary education, and employment.
 
6. N.J.A.C 6A: 3.8(e) - The proposal would change the reevaluation timeframe from 60 days to 90 days. This is a bad idea because it would delay the development of an appropriate IEP and the provision of services for an additional 30 days. The 60 day period was a compromise period reached during the last reauthorization, as school districts were taking unlimited amounts of time to re-evaluate students. Assuming that a district maintains a “tickler file” that identifies the necessary due dates for these re-evaluations, there is no reason to extend the timeframe for another month, and the DOE has not offered any rationale other than school district convenience. 

7. N.J.A.C. 6A:14-4.1(g) - The proposal under this section would increase the evaluation timeframe for students transferring from one NJ school district to another NJ school district or from an out-of-state district from 30 days of the date the student enrolls in the new district to within 90 days of the date the student enrolls in the new district. This is a bad idea because it will delay the delivery of appropriate services for a transferring student for almost 1/3 of the school year. While another part of the regulation requires the district to provide “comparable services” during the evaluation period, often there are no “comparable services,” so students are asked to remain at home or are placed inappropriately until the district completes evaluations.
 
8. N.J.A.C. 6A:14-7.6(c) – The proposal under this section would require only teachers and paraprofessionals dealing with special education students in public schools to be “highly qualified” under federal and state law. Therefore, students place in private schools by their public school districts via the IEP process, would not necessarily receive instruction by teachers deemed highly qualified. There is no rationale for distinguishing the requirements for instructors paid for by tax dollars. Teachers of students with disabilities should be highly qualified regardless of whether they teach in public (including charter and special service) or private schools.

9. N.J.A.C. 6A: 14-3.3(3) – The proposal under this section would eliminate the presence of the full Child Study Team at Identification and Evaluation Planning Meetings and instead would require only one member of the Child Study Team to represent the full team at
these meetings. This is a bad idea because it encourages Child Study Teams to pre-determine outcomes before a formal meeting with a parent and potentially creates a situation where one team member unilaterally makes all decisions for the team. And, if 
the parent is dissatisfied with the result, this practice is likely to increase formal dispute resolution with districts. 

NOTE: NJAC 6A: 14-3.8 (Re-evaluations) – The Department of Education proposes amendments to this regulation that exceed the Transformation Task Force’s recommendations and to make “grammatical improvements,” But there is a glaring change that should be made to bring our code into conformity with federal law. 

Under federal law, re-evaluations are to be performed every 3 years (or sooner if requested), to determine both whether a student continues to be a child with a disability and, if so, to identify the student’s educational needs. Our Code, however, just describes the purpose of re-evaluations as “to determinate whether the student continues to be a student with a disability.” As a consequence, the Code simply does not address the requirement that the triennial re-evaluation is to be conducted to determine a student’s educational needs and does not so inform parents. Appropriate conforming amendments to the regulation should be made. 

NOTE: NJAC 6A: 14-3.7(e)2 (Individualized education program) - The Department of Education proposes changes to this part of the regulation to say that the IEP should include a statement of measurable annual academic and functional goals “related to the CCSS (the common core state standards that are replacing NJ’s core curriculum content standards).” Unfortunately, the re-wording of the regulation, intended to make it more grammatically clear and to accommodate NJ’s shift to new core standards, continues to distort the federal requirement that the IEP contain “a statement of measureable annual goals, including academic and functional goals designed to…(A) meet the child’s needs that result from [his/her] disability to enable the child to be involved in and make progress in the general education curriculum; and (B) meet each of the child’s other educational needs that result from the … disability. “ The “related to” language used in the NJ Code has caused endless confusion among educators, who believe that this requires inclusion in the IEP of goals from a goal bank of dozens of core content standards, rather than developing goals tied to the child’s deficits to enable him or her to access the core standards. As a consequence, this key provision of the IEP is breached in many districts in the State, and the Department has acknowledged that it has given up training districts how to comply. Rather than continue to live with a poorly drafted rule, why not rely upon the federal regulation for guidance in this area, as the Department suggests in so many other instances?

Friday
Mar152013

MOVIE - The Story of Luke - Review and Preview of New Film About Autism Launches Worldwide April 5 by Brian Cimins

1 in 88 children are diagnosed with Autism.  All of the children and
beautifully gifted in their own way, but because we are just starting
to uncover the mysteries of Autism and Aspergers, we are realizing how
very special and unique each child or adult with Autism is.  Just like
no child is the same, no child with Autism is the same.  Some children
do not speak, some are slightly introverted, some can't be touched,
some don't like loud noise, and a million other unique potential
differences that stand out on the Autism Spectrum.

There have been only a few movies that truly captured the true essence
of Autism including the Temple Grandin movie on HBO back in 2010.  The
Story of Luke captures the innocence, the essence, the unfiltered
love, the challenges, the family healing power of a child (or adult)
with Autism, and the HOPE of love - "The Story of Luke" nailed it and
is a must see for anyone affected by Autism.  Quite simply stated, The
Story of Luke is the best Autism movie ever made and everyone will
enjoy it on multiple emotional levels including laughing out loud and
crying uncontrollably, especially those who truly LOVE someone with
Autism. Please watch this movie to gain a better understanding of
Autism's large spectrum and how one person's experience with life is.
It'll grow your heart to better understand the family challenges and
quality of life issues for 1 in 88 children in America.

Find out more information on the movie, which launches Worldwide on
April 5, 2013 - get info here:
http://www.thestoryofluke.com/

You can help these families directly at: http://AutismDonation.org

I've had the pleasure of working closely with Paul Cimins of Autism
Radio (http://AutismRadio.org) since inception of their amazing
charity that helps families challenged with Autism every day.

Many people do not know that Paul Cimins' 9-year-old son, Jonathan
Cimins was diagnosed with Autism at 2-years-old after an adverse
reaction to a Vaccine.  He went from 50+ words to Zero words after a
105 degree temperature and hasn't communicated since.  Paul and his
family were massively challenged back in 2003 without any available
information, diet, alternative treatments, supplements or special
services.  Paul Cimins became The Autism Super Dad, a voice for his
son and the millions affected within the Autism community seeking
knowledge in an open minded non-political environment.

the host of the World's First Autism Family Support Network and
program "Hope Saves The Day" on iHeartRadio, iTunes and streaming 24/7
online at: http://AutismRadio.org

Seeing this movie gave me hope for my nephew Jonathan - because I
imagine him speaking one day just like "Luke" with the heartfelt
emotional learning curve that comes so naturally to most people, but
not as natural with some children with Autism or Aspergers. See how
"Luke" heals everyone he comes into contact with, the POWER of LOVE
within a child with Autism is amazing.  As parents and relatives and
friends, we need to support the parents and child equally, because so
many parents and children with Autism live in private despair, afraid
to leave the house, and afraid to face the world. Awareness of the
signs of Autism and showing extra kindness and patience or being a
REAL friend to someone affected with Autism can become one of the most
special experiences in life.

Keep shining your LIGHT, especially for those who need it the most.

With your happiness, success and healing in mind,

Brian Cimins,
Your Strategy Coach and
Co-Founder of "Coaching for Autism"

Strategic Intervention, Business Coaching
and Entrepreneurial Advice for Charity at:
http://www.autismradio.org/life-coaching-for-autism/

"The Story of Luke" Review was originally posted at
http://YourStrategyCoach.com and directly here:
http://briancimins.com/2013/03/14/movie-preview-the-story-of-luke-amazing-film-about-autism-and-life

Thursday
Mar142013

Why New Jersey needs A-2893/S-254 - The "Innovative Services for Persons with Developmental Disabilities Act."

Why New Jersey needs A-2893/S-254. 
 The "Innovative Services for Persons with Developmental Disabilities Act."

  • The State has long faced a problem securing residential placement for persons with developmental disabilities. The number of persons on the priority waiting list has stood at around 5,000 persons for far too long.
  • Existing approaches for identifying appropriate residential placement opportunities are clearly not working.
  • Moreover, the ability to move persons out of the State's developmental centers is hampered by inadequate community housing opportunities.
  • Additionally, the availability of non-residential services for this population has been diminished by the State's fiscal constraints and State Budget cuts.
  • There are private housing and other service providers willing to develop innovative approaches to address the shortage of both residential opportunities and non-residential services.
  • However, these providers face obstacles that discourage the pursuit of these innovative approaches or stop them when attempted. Often it is the result of State agencies with oversight of such services being unwilling to allow new and innovative approaches.
  • Current state policies stand as a hurdle to these new and innovative approaches and emasculate Centers for Medicare and Medicaid Services waiver rules (42 CFR 430.25) that encourage states to "implement innovative programs or activities."
  • Assembly Bill 2893 and Senate Bill 254 seek to encourage these new and innovative approaches by private providers as well as through public-private partnerships to address the shortage of community residential housing and other services for persons with developmental disabilities. It does so in a manner that assures that persons with developmental disabilities are integrated into the community, can interact with peers who are not disabled, can engage in social interactions with persons of their own choosing and live as independently as possible.

 

Carolann Garafola, MA
Executive Director
Mt. Bethel Village
Supportive Housing for Adults with Special Needs
130 Mt. Bethel Road
Warren, NJ 07059
Tuesday
Mar122013

New Film - The Story Of Luke

The Story Of Luke, a comedy about Luke, a young man with autism who embarks on a quest for a job and a girlfriend. Starring Lou Taylor Pucci, Seth Green, Cary Elwes and Kristin Bauer. Written and Directed byAlonso Mayo, based on his experiences at Centro Ann Sullivan del Perú, as seen in his research documentary “Just Like Anyone“. Winner of Best Film at Irvine International Film Festival & San Diego Film Festival, and Audience Awards at Fort Lauderdale Film Festival & Bahamas International Film Festival.

Luke, 25, is autistic and lives a sheltered life with his grandparents. But his world is suddenly turned upside down when his grandmother dies and he is forced to live with his dysfunctional relatives who have no patience for him or his senile grandfather, who they quickly force into a nursing home. Luke is left with his grandfather’s final semi-coherent words: “Get a job. Find a girl. Live your own life. Be a man!” For the first time in his life, Luke has a mission. He is about to embark on a quest.

 Visit www.thestoryofluke.com for more info.

Monday
Mar042013

Mia: Recovery from Autism

by Chris Ford (Chris can be reached at chrisanddinaford@yahoo.com)

I am releasing this story here as a means to get this story out to as many people as possible.  I am a physical therapist for 14 years, a healthcare provider; I am a husband and a Dad.

I do not work in pediatric physical therapy.  That particular patient population is not my clientele, and I do not plan on specializing in pediatric physical therapy in the future.

I have nothing to gain from this at all except for my colleagues in health care and the doctors who refer to me to think of me as a quack or a nut.

That being said, I feel that it is my moral and ethical duty to share this story to you and anyone willing to take the time to read it.  It may help them or someone that they know.

My wife’s sister’s son is autistic, I had an entire pediatric internship in pediatrics dealing with developmentally delayed children, some who were diagnosed with autism.  I have a few close friends with autistic children – I KNOW what autism looks like.

Sensory and Feeding Issues

I had always noticed things that appeared to be sensory issues with my daughter.  At about 4 months, I observed hand stimming when she became excited.  When she began to stand and walk she was on her toes constantly.

She was a fussy eater, eating only very small selection of foods. She hated foods or objects (soaps, playdough) with slimy textures.  All of these concerns were brought to the attention of our pediatrician who dismissed them, occasionally with a roll of the eyes and assured my me and my wife and me “it’s something she’ll outgrow”.

Outside of these concerns, she appeared to be developing normally and interacting well with family and other children.

Recurrent Ear Infections

My daughter Mia had been given antibiotics on and off since November 2010 till April/May 2011 for frequent, reoccurring ear infections.  Between April and May of 2011, she was on 4 different antibiotics (the last of which being Augmentin) for approximately 5-1/2 weeks straight, maybe more.

Regression

During the 5-1/2 straight time span, she began to progressively regress developmentally and her sensory issues began to worsen.

MIAFOG2-300x225.jpg

Mia in a fog

She started tuning us out, not looking when we called her name, even when we shouted her name.

We would position ourselves right in front of her and try speaking with her and she would look right through us.

She began to keep to herself, not playing much with her brother or children in her nursery school class.

She wouldn’t allow us to change her diaper or clothing without throwing a fit or tantrum.

Mia stopped going up and down stairs, a skill that she was already performing regularly – instead, she would drop to her rear and throwing a tantrum until we carried her down.

Prior to this she was an excellent sleeper and would sleep the entire night through without awakening.  She began awakening repeatedly in the night crying and was unable to be consoled.

On Wednesday 6/1 – we went in her room to get her ready and she was GONE – not physically , but our child, Mia was like a robot/zombie.  She would look right through us with a glassy-eyed gaze, almost lifeless.

Mia stopped responding to questions appropriately – answering us only in “pre-recorded” phrases and lines from her favorite TV shows and using phrases my wife and I had used in the past in the exact same fashion (tone, pitch, etc.) – and the phrases used were totally not appropriate to the questions asked.

For example: “Good morning, how are you Mia?”  Mia’s response was, “What color is the grass? The grass is green – Yes, Very good Mia”.  “How are you Mia.”

She once again refused to walk down the stairs, so we carried her down stairs to the living room, where we have a small ball pit that our kids enjoy playing in.

We were horrified when we observed her taking balls out of the ball pit and lining the balls up in a row – and throwing a tantrum if we moved one of the balls out of line – one of the well know signs and symptoms of autism.

She refused to walk on grass – when I put her on it, or even if she walked near it, she would drop to her rear end and throw an inconsolable tantrum.  Prior to this she LOVED running on the grass and playing ball on the grass.

Dina and I watched in complete horror – as she regressed day to day. We were unable to sleep for days  – we knew what we were seeing happen and couldn’t stop it.

Early intervention was booked up for weeks; the earliest neurology appointment we could get was almost 3 months away.

Days blended into nights as neither one of us were able to sleep – wondering what would become of our daughter once we were dead.  Would she end up in a “home”?  Is it fair for us to expect her brother or any other family member to take care of her – these are the things that occupied every moment of our lives.  We went to work and existed on autopilot.

“Your Daughter Is Probably Full of Yeast”

By luck, chance, and Grace of God – through a physical therapy colleague I was put in contact with Paul Cimmins of AutismRadio.

Paul has an autistic son, and has been extremely active in the autism community – he is up on all of the mainstream treatments as well as many of the not so mainstream treatments based on theoretical causes of autism.

Paul first tried to calm me down as I was totally beside myself wondering what was ahead of our family.  He then asked me about the history – what had happened, etc.

After hearing about her repeated antibiotic usage, especially most recently a 5-1/2 week stretch of them he said, “Your daughter is probably full of yeast”.

Paul went on to explain that one of the theories about causes of autism is that prolonged antibiotic use.

The antibiotics kill the “bad” bacteria, but our gut/stomach is also home to “good” bacteria that help to break down food, clear the system of toxins, etc.

When these good bacteria are killed off, it throws everything off.  Food is not digested appropriately, and yeast begins to grow wild in the body.  The stomach/gut feeds the brain, and all of these harmful things go to the brain.

Paul’s recommendations: he suggested that we begin giving Mia children’s acidophilus supplement (good bacteria found in yogurt) 2 times a day in conjunction with a gluten- and dairy-free diet.

Out of sheer desperation, we decided to try the regimen that Paul suggested, not really believing it would make a difference.  To our amazement, we saw positive changes within a few days.

Paul explained to  us that in a day or two Mia would run a high fever.  He explained that this was called the Herxheimer effect and the body’s response to all of the yeast die off once acidophilus was introduced to her system that was loaded with yeast.

2-½ days after initiating this regimen, Mia had a fever of 105.6, which broke in 12 hours, returning to a normal body temperature.

We saw clumps of white in her stools, and even touches of white within her tears – which Paul informed us was the yeast that had “died-off”.

Recovery

Her attentiveness increased.  We would speak to her, and she would understand and respond appropriately.

She began to negotiate stairs again, she stopped fighting us during changing time, her eye contact has drastically increased, she slowly began to stand on grass, and then to run on the grass barefoot! (huge sensory gain), and her robotic speaking and echolalia completely stopped.

She stopped lining toys and objects up.  She began sleeping through the entire night without awakening.

We set up speech therapy, occupational therapy and ABA therapy and worked with her every opportunity we had. We virtually eliminated TV when she was awake in order to encourage interaction with us and her brother Nicholas.

One and a half years later, Mia is a completely different child than on 6/1.

These progressive and amazing changes have been noticed by her teachers at nursery school, and her therapists and family.

She is extremely social and affectionate, loves engaging in pretend play loves hugs, kisses, and teasing her brother.  Toe walking has decreased to only about 5% of the time.  Many of her sensory issues have diminished significantly or completely resolved.

In hindsight, her hand stimming all began when grain cereal was added to her diet and from that point on, she began to progressively regress especially after the long period that she was taking antibiotics on and off.

After doing an exhausting amount of research since our journey with Mia started, our feeling and hypothesis is that my daughter was beginning to spiral downward into autism, and because the diet and supplementation was implemented at the early stages, we were able to reverse the process.

By the grace of God, I was put in contact with Paul Cimmins, not a doctor, but a caring and knowledgeable father of an autistic child who was not afraid to look and think “outside the box” for potential causes of autism.

His dietary recommendations and the incredible work of her therapists has saved our daughter from a life of Autism.

Our family going gluten-free also yielded some other incredible and unexpected results…

Nicholas

Mia’s older brother Nicholas was beginning to have very frequent tantrums and “melt downs”. He has a rash that would just not go away on his cheeks, on his bottom and on his belly.  When our entire family went gluten free, his rash disappeared, and his “bad” behavior significantly decreased.

After going gluten-free, we began to observe that Nicky’s tantrums and behavior problems decreased, but still existed – but only on Friday nights, Saturdays and into Sunday.  It was not apparent at first, but we finally figured it out.

We were all eating gluten-free as a family, BUT we didn’t suspect that gluten intolerance was an issue with Nicky.

We finally figured out what was happening…

Because we did not want him to feel left out or excluded at school, we allowed him to have pizza on “Pizza Day” which was every Friday at his school.

We also realized that Nicky’s rash would come back if he played with Playdough at school – which contains gluten.

We finally found a local pizza place that had gluten-free pizza, brought the kids gluten-free pizza on “Pizza Fridays”, and Nicky’s rash and behavior issues resolved.

Dina

Dina had very non-specific knee pain in both legs that no doctor was able to find a cause for.  As a child, the pain was chalked up to being “growing pains”, as she grew into her 20’s, 30’s and now at 40 years old, these so called “growing pains” persisted.  Once going gluten-free, these symptoms drastically decreased.

Dina would also get a random patchy rash on her stomach that, like her knee pains could not be explained or cured by any doctor since childhood.   Once going gluten-free, this rash also resolved.

Dina always had GI symptoms which she just accepted as part of her life.  These symptoms drastically improved since going gluten-free.

On and off throughout our relationship, Dina would seem to slip into phases where she would become deeply depressed, and although everything in our life seemed great and very stable on all levels (family, finances, etc.), she would enter this deep depression and not be able to answer why.

At times, I often feared for our marriage as she genuinely seemed unhappy with our life together.  When Mia’s issues started, although I knew we would do whatever was necessary to help our daughter – I feared for the impact this added stress/situation would have on our marriage.

I honestly expected her depression to become worse and her episodes of irritability and unhappiness to become more severe and more frequent.

To my surprise, these episodes disappeared.  I couldn’t believe it, but with the added stress, worry and uncertainty of this situation, Dina’s depression and irritability disappeared in the absence of gluten!

Myself (Chris Ford)

For years I struggled with diet and the quest to look better as I worked in the professional wrestling industry.

I would do the “gold standard” body building work out:  high protein, lower fat and carbs and all the carbs HAD TO BE whole wheat, whole grain, multi grain, etc.

I would diet the pounds off, but had to really work hard to do it.  I cut calories drastically, far below my resting metabolic rate, and in spite of this it seemed as if  I had to do what I thought seemed like an unusually excessive amount of cardio to take off small amounts of body fat.

Since going gluten-free, my belly fat seemed to literally melt off of me.  I am able to eat significantly way more carbs then I ever have (just no wheat) – shocking my friends and family who were previously used to watching me eat very little carbs – ever!

I am never hungry.  I never feel deprived, and I am keeping the weight off / staying lean with a normal / minimal amount of cardio exercise along with my weight training.

A Gluten-Free, Healthier Family

At first we were unaware and unsure of the incredible effect a gluten-free diet would have on us why.

FORDSNOW-rotated-225x300.jpg

The Ford family now

While we were strict with the children’s diets we would occasionally cheat – trying a slice or two (maybe a whole pie between the both of us) of our favorite neighborhood pizza.

These cheat sessions resulted in the return with a vengeance of Dina’s GI issues, knee pains, random rash patches and a resurfacing of depression and irritability.

The good part was we were able to recognize what was causing this and now we avoid cheating at all costs.  It really is amazing what diet can do.

This experience with gluten free has prompted the Ford family to drastically limit dairy intake, and we buy and eat organic whenever possible.

- Chris Ford (Chris can be reached at chrisanddinaford@yahoo.com)

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