High Five Park For Children With Autism Opens In Newark! Preston’s Playground Coming Soon!

Newark is taking care of kids!  One park for children with Autism opened up last week and another park for special needs children is on the way!

Rob and Elizabeth Scheinberg have a daughter with Autism.  Two years ago they found out there were no playgrounds for children on the Autism spectrum.  As the Newark Post wrote today, the parents contacted the county and after two years, their dream became a reality: Delaware’s first playground designed exclusively for children with Autism.  Located at Glasgow Park, the park has many features that help children with Autism in what are otherwise sensory unfriendly environments:

Every piece of the park has meaning, from the large mirrored sphere at the entrance to the music area with chimes, xylophone, drums and interactive sound boards.

Elizabeth Scheinberg said children with autism love mirrors because they are visually and sensory stimulating, and playing music encourages kids to work with their hands and learn how to grasp. She said they also like circles and circular movements, so the never-ending paths that meander throughout the park and around the perimeter really appeal to them.

“The lines in this park don’t end,” she said.

The paths are made of squishy artificial turf, which helps children learn to maintain balance, as do the stand-up spinners, hammocks and basket swings throughout the playground.

Elizabeth Scheinberg previously served on the Board of Education in the Christina School District.  She is well-known advocate for all students with disabilities in Delaware.  I did reach out to Elizabeth to get permission to post this story to which she gladly said yes.  She did want to add that the gates in the playground are not designed to keep people out but to keep the kids in.  Many children with Autism can be what is known as “runners”.  I would highly recommend to all parents that even though all are welcome, to please close the gate to the playground when you enter.  And a big thank you to the Scheinbergs for having a vision for something really good and seeing it become something even better.

Another inclusive playground for special needs children in Newark is under development.  Preston’s Playground will open at The Reservoir.  They are still looking for donations, so if you have the means, please consider donating for this excellent cause!  They are shy of their goal for this so every bit helps!

I think it is really awesome folks are getting together and making awareness around having playing areas for kids with disabilities.  Every child wants to feel like they are part of something.  But for many of these kids, the existing structures are not conducive to their needs or abilities.

Governor Markell To Sign Autism Legislation On 9/14

Autism advocates fought for this bill.  Now, after a long summer, Delaware Governor Jack Markell will finally sign Senate Bill 93 at Autism Delaware, 924 Old Harmony Rd., Ste. 201 on Wednesday at 9am.

An act to amend Title 16 of the Delaware Code related to creating an interagency committee on Autism and the Delaware Network for Excellence in Autism

Senate Bill 93 was one of two Autism bills sponsored by Delaware Senator Margaret Rose-Henry which were introduced on May 12th, 2015.  After more than a year, Senate Bill 92 died as the 148th General Assembly ended on July 1st.  But Senate Bill 93, with its amendments, finally passed in the House in the late hours of June 30th after amendments passed.  Senate Bill 93 will give hope for better coordination of Autism services for the many parents of children and adults with Autism in the First State.

The history behind this legislation goes back a few years.  In 2013, Autism Delaware, with the University of Delaware’s Center for Disabilities Studies and the Delaware Department of Education, released The Blueprint for Collective Action.  In the last days of the 147th General Assembly, an Autism Task Force was created.  Led by Senator Rose-Henry, the Autism Task Force created what eventually became the original bills, Senate Bill 92 and 93.  Senate Bill 93 was co-sponsored by Senators Catherine Cloutier and Bryan Townsend and State Representative Earl Jaques.

Delaware Autism has been the leading organization in Delaware for decades to help those with Autism.  To see a copy of their most recent newsletter, click here.

To see exactly what this bill will do for people with Autism, please see the below engrossment of the legislation which is exactly how it will be signed by Governor Markell.

View this document on Scribd

Delaware House Education Committee Releases Two Autism Bills But Kills Controversial Amendment

The Delaware House Education Committee released Senate Bills 92 and 93 yesterday at their weekly meeting.  The unanimous release was expected, but an amendment on Senate Bill 93 was taken off by the committee.  If the full House passes Senate Bill 93, it will go back to the Delaware Senate since the amendment previously approved by the Senate was taken off.  Since there is a fiscal note for both bills, they are going to the House Appropriations Committee.  The amendment that was removed by the House Education Committee states the following:

AMEND Senate Bill No. 93 by deleting lines 58 through 60 and substituting in lieu thereof the following:

14) A representative from the Delaware Collaborative for Educational Services (DCES) or, until DCES is created, the Special Education Officer for Strategic Planning and Evaluation at the Delaware Department of Education;

15)  A representative appointed by the Division of Prevention and Behavioral Health Services;

16)  A parent or caregiver of a child or adult with ASD from each  county in Delaware;

17)  An individual with ASD.

FURTHER AMEND Senate Bill No. 93 by inserting the following after line 102:

(t) The Network and the Network Director shall collaborate with the Delaware Collaborative for Education Services (DCES), an entity to be created out of recommendations from the Special Education Strategic Plan, a plan directed by language in the FY15 Budget, Section 307 Epilogue.    The collaboration shall begin after the DCES is formed.  In particular, the Network shall collaborate  with DCES to develop coaching, professional development, and technical assistance in areas where there is overlap with services provided to people with Autism Spectrum Disorders as well low incidence disabilities, including but not limited to visual or hearing impairments, or simultaneous visual and hearing impairments; significant cognitive impairments; or  any impairment for which a small number of personnel with highly specialized skills and knowledge are needed in order for children with that impairment to receive early intervention services or a free appropriate public education. 

 

SYNOPSIS

This amendment adds a representative from the Delaware Collaborative for Educational Services (DCES) or, until DCES is created, the Special Education Officer for Strategic Planning and Evaluation at the Delaware Department of Education as a voting member of the Interagency Committee on Autism (ICA).  It also adds a new paragraph (t) at the end of the bill containing provisions for the collaboration between the Network and the Network Director and the DCES, after it is created.

Many members of the Delaware Autism community did not like this amendment and felt the Delaware Department of Education was overstepping quite a bit.  I wrote about this a few weeks ago.  Apparently the legislators in the House Education Committee agreed.

As Legislation For Autism Pass In Delaware Senate, Very Strange Rodel Connections Sneak Into Special Education

Last week, the Delaware Senate passed both Senate Bill 92 and 93.  The legislation, dealing with Autism, passed unanimously in the Delaware Senate.  I wholeheartedly support this legislation as originally written, and I hope the House of Representatives passes it very soon.  The children and adults with Autism of Delaware have waited long enough for more support.  But what concerns me are the amendments added to both bills during the Senate vote last week.  Below are the original bills and the amendments.

With the amendment on Senate Bill 92, this takes away the authority of the Delaware Department of Education and the State Board of Education to provide training and technical assistance for students with autism.  This will shift to the University of Delaware’s Center for Disability Studies.  The funding for the training specialists comes from the appropriations act AND possible tuition fees from the local school district.

The amendment for Senate Bill 93 references things that aren’t even in existence at present.  Upon doing a Google search, there is no established entity called “Delaware Collaborative for Educational Services”.  I did find reference to similar groups in New Hampshire and Massachusetts but none for Delaware.  How can legislation provide for an organization that doesn’t exist anywhere in the public domain?  But while we are waiting for the creation of this mythical initiative, the representative on the Delaware Network for Excellence in Autism will be the Special Education Officer for Strategic Planning and Evaluation at the Delaware DOE.  Who is this person?  That would be Matthew Korobkin.

Korobkin came to the Secretary of Education’s office in March of 2015.  I first found out about him last summer when I was discussing special education with Melissa Hopkins from the Rodel Foundation.  She mentioned Korobkin and how he was going all over Delaware to find out best practices with Delaware special education.  She suggested I reach out to him to discuss my concerns with special education.  I emailed him but never received a response.  I found out soon after where Korobkin came from: the Rodel Foundation.

This is where things get very strange with this bill.  Korobkin’s history shows more of a slant towards special education technology.  How does someone who has a very brief tenure as a special education data teachers and an administrator position that is more a Technology Curriculum role than a true administrator become the key person in Delaware’s special education strategic plan?  Simple: he came from Rodel.  If you do a Google search on Korobkin in Delaware, you see many links to his functions at Rodel.  But for the DOE, you see his role as a member of the Statewide Educational Data Task Force come up the most.  He appears somewhere in the below picture.

I find it somewhat frightening that a data person would be put in charge of a statewide special education plan, much less someone who came from Rodel.  During his time at Rodel, he ran the Rodel Teacher Council.  He even gave his own biography in 2012 after he joined Rodel.  I can think of hundreds of other people in Delaware who are immensely more qualified than Korobkin for this key role that was snuck into the Fiscal Year 2015 budget epilogue:

 

I did find a link to the minutes of the February 2016 meeting of the Governor’s Advisory Council for Exceptional Citizens.  Korobkin gave a presentation on the progress of this special education strategic plan.  Even more interesting was the attendees part of the minutes.  Both Hopkins and CEO Dr. Paul Herdman with Rodel attended this meeting.  I would imagine it was to see their former employee/current DOE plant give his big presentation.

I also linked to this Korobkin’s proposed Strategic Plan when he gave a presentation to the State Board of Education at their Spring Retreat last Friday.

Like I said in the first paragraph of this article, this legislation is a must.  But why do we have Rodel poking around in special education?  This non-profit organization doesn’t support a parent’s right to opt their child out of high-stakes testing, helped Governor Markell and the DOE win our first-round win in the Race To The Top competition, supports Common Core and personalized learning, and heavily supports charter schools at the expense of traditional school districts.  And now they want to get involved in special education?  Sorry, I’m not buying it.  Their activity in Delaware education is not good for any student, much less students with disabilities.

It will be interesting to see what comes out of the House Education Committee meeting on these bills.  And I plan on viewing this Strategic Plan due in May of 2016 the second it comes out!  Parents of children with Autism should have concern about some of the language in these amendments, specifically Senate Bill 93.

 

 

Red Clay: Your Inclusion Plan Is NOT Working. This Needs To Stop…NOW!!!!!

Last year, the Red Clay Consolidated Board of Education approved an inclusion plan for students with disabilities.  Instead of paying for students with severe and intense difficulties in their own educational setting, as required by federal law under IDEA, they decided to stick them with all the regular students.  The results have not been kind to these students.  I’ve been following this story for a while now, but with everything else going on I haven’t been able to give it the attention it deserves.  This changes now.  If I have to fight multiple fronts, I will.  This post put up by a sister of a Red Clay student with Autism was put on Facebook.  This should not be happening at all.  I am begging the Red Clay board to put a stop to this now.  If it means you don’t have funding for WEIC, so be it.  If you can’t handle your own, than you definitely shouldn’t be taking more.  I like some of you as people, but if you can’t get your act together as a whole for students with disabilities, all bets are off.

Today, my mom got a call from one of my sister Juliana’s teachers at Conrad. Her teacher told my mom that Jule was being horribly mocked and teased because of a pair of boots she liked and decided to wear to school today. Juliana is bullied and tormented every single day that she goes to school because she is autistic and she functions differently than other 7th graders. However, today was especially hard to hear about because she came home saying it was “one of the best days of her whole life.” When we asked her why, she said it was because her boots caught everyone’s attention, they were “complimenting” her, and even taking pictures. This honestly broke my heart because anyone would know that those kids weren’t really trying to make her feel good about herself in any way, and those pictures most likely ended up on Instagram or snapchat for everyone to mock. I just don’t understand how kids can be so cruel, especially to someone with a learning disability that doesn’t recognize sarcasm and thought all of their comments were serious. It breaks my heart to see her go through this every day of her life but today really struck something. If you have kids, please teach them kindness. It can be all someone like Juliana needs to know they’re not alone. My sister is a 12 year old girl living with autism, and she’s fucking amazing. Any kid that wants to at come for her, has to come through me first.

Is this really the environment Red Clay wants in their schools?

Generous Delaware Family Donates $4 Million For Autism Program At Nemours/A.I. duPont

The News Journal just reported that the Katzin family of Greenville donated $4 million to enhance an autism section of the Nemours/A.I. DuPont Children’s Hospital in Wilmington.  This is incredibly awesome!

Although Nemours has treated children with autism for decades, the Katzins hope their gift will serve as seed money to make the hospital and Delaware a major center for the understanding and treatment of autism. Their son Jack was diagnosed in 2002.

The donation will help neurologists and doctors better understand how autism works in the human mind and will allow them to research more effective treatments for the disability that has seen a spike in diagnosed cases in the past twenty years.

“We have a chance to put together something unique to better understand the scientific causes of autism and to work toward better treatments and better support,” said Diane Chugani, who has been director of the Children’s Hospital of Michigan Autism Center.

Any additional funding for disabilities is great.  This could certainly help Senate Bills 92 and 93 in Delaware which face a steep price tag in a coming fiscal year budget deficit battle where everyone will be fighting for funding.

Senate Bill Would Create Interagency Committee for Autism & DE Network for Excellence in Autism

The Autism Task Force recently completed their findings, and new legislation which will be introduced later today will create two new entities for tackling issues of autism.  Sponsored by Delaware Senator Margaret-Rose Henry, the bill would create the Interagency Committee for Autism and the Delaware Network for Excellence in Autism

Family Voices Hosting Workshop for Parents of Children on the Autism Spectrum in Sussex & Kent Counties

This information, sent to me by a Good Samaritan, is awesome!  I would definitely register for this if you have a child on the Autism Spectrum.  Parents of special needs children need all the help and support they can get.  Kent and Sussex counties in Delaware have been lacking in this kind of support over the years, but things have been on the upswing the past few years.

Kent and Sussex Parents:
 Are you a parent of a child with ASD?
Please share your invaluable experience!
Come out to our 1 day Parent to Parent Workshop!
Become a Certified Support Parent

The Delaware Family Voices P2P and Autism Delaware have partnered together to offer the Parent to Parent program specifically to families whose children have Autism Spectrum disorder.

Delaware Family Voices is the official Delaware Parent to Parent (P2P) State Chapter and alliance member of Parent-to-Parent USA.

P2P USA has been providing emotional support to families of children with special needs, most notably through the one-to-one matching of parents seeking support with an experienced, trained “Support Parent”.
Become part of a national support network!

Delaware Family Voices P2P provides the training for parents of children of any age, with any special health care need.  This training will be specific to ASD. 

HYPERLINK “http://delawarefamilytofamily.wordpress.com/2012/09/10/introducing-the-delaware-parent-partners-program/2012septp2pusaimage/”

If you would like to train to become a Support Parent and share your knowledge, experiences, and support with someone newer to this journey, please register for this specialized training.

Lunch and light breakfast will be provided during the training

                         Wednesday April 15, 2015   9 A.M.-3 P.M.
The ASD-P2P Training will be one-day training.
                          Autism Delaware Office
      17517 Nassau Commons Blvd. Unit #1    Lewes, DE 19958

Registration is required as materials are sent out in advance and space is limited.

Childcare reimbursement is available upon request.

Please contact Ann Philips (302) 669-3031 or annp@defv.org Thank you.

Governor Markell Gave Keynote Address At UN For World Autism Awareness Day

Governor Markell travelled to New York City today to give the keynote address for the observance of World Autism Awareness Day by the United Nations.  From the Governor’s website:

New York, NY – With an opportunity to advocate alongside the head of the United Nations, Governor Markell today gave the keynote address at the UN’s observance of World Autism Awareness Day. Joined by Secretary-General Ban Ki-moon, as well as multi-national corporation executives, civil society advocates, education and policy directors, and advocates and members of the autism awareness community, his remarks focused on ongoing efforts in Delaware and across the country to increase employment opportunities for individuals with disabilities. The Governor’s leadership on this issue, most prominently through his initiative as chair of the National Governors Association, was cited as the reason behind the invitation to provide the keynote address.

“We absolutely can greatly increase the number of people with autism and other disabilities in the workplace, but to address this challenge on a large scale, we need everyone to do their part,” said Governor Markell during his remarks. “Let’s not make this someone else’s problem to solve. Today, let’s take responsibility for what we can change and let’s give millions of people with autism the opportunities they deserve.”

With “Employment: The Autism Advantage” as its theme, the event focused on the work and employment of people with autism, with the goal of this day’s observance leading to the establishment of a coalition of companies pledged to employing persons with autism in the future. Also appearing were Specialisterne founder Thorkil Sonne and Computer Aid, Inc. Managing Director Ernie Dianastasis, who have partnered with the Governor in efforts to increase employment of people with autism in Delaware.

Governor Markell’s remarks (as prepared for delivery)

It’s an honor to join you for this special event. You have helped to debunk myths, while ensuring governments and their citizens understand what the diagnosis of autism really means and how to best serve people across the autism spectrum. That has meant a better quality of life for so many. However, we gather today knowing that to give these individuals a chance to realize their potential, we must do more to give them access to employment. Anyone with the ability to work deserves the chance to experience the self-fulfillment, confidence, and gratification that comes from a good job.

So the employment statistics are discouraging. A recent study found that among young adults with autism, only half have ever held a paid job outside the home even though many more want to work. That figure reflects a long-time struggle to increase employment among people with disabilities.

In the United States, we passed the landmark Americans with Disabilities Act nearly a quarter century ago. But today only about 30 percent of working age people with disabilities are in our workforce. We can change these trends. A more rewarding future is possible for millions of people with disabilities, including millions of people with autism.

As chair of the National Governors Association a couple of years ago, I had the opportunity to choose the issue of increasing employment of people with disabilities as a year-long initiative. After engaging with the disabilities community, business leaders, and government officials across the country, we developed a roadmap – a series of straightforward ways that government and business can partner to solve this challenge.

I’m going to speak more in a moment about the findings of our national effort and why that should rally us to put more people to work. But there is no better inspiration for realizing the potential of people with disabilities and of people with autism specifically than one of our presenters today.

Let me briefly tell you the story of my friend Thorkil Sonne, who moved to Delaware two years ago, leaving Denmark with his wife and their 16 year old son, Lars. Until 14 years ago or so, Thorkil was an executive at a Danish information technology company.  He was on the fast track, creating a good life for him and his family. Around that time, Lars was diagnosed with autism. Thorkil and his wife didn’t have much experience with autism or with disabilities generally. Like for so many families, having a son with autism wasn’t something they had considered as part of their life plans. And they didn’t know what the future held for Lars. The more they learned about autism, the more they worried that Lars’s future was limited and learned why parents of children with autism worry that their kids will grow up with few friends; few social opportunities; and few chances to get a job.

So in a great act of fatherly love, ten years ago, Thorkil quit his job at the IT company and created a company called Specialisterne, which translates as “the specialist people.” He just knew that people like Lars could contribute real value for businesses and other employers if given the chance. But he could tell they too often were not given that chance.

Thorkil tells the story of watching Lars one day take out a blank piece of paper and start to draw connected and overlapping boxes with letters and numbers inside. Thorkil was puzzled, but then had an epiphany.  He went out to his car to pull out one of those books of maps of Europe and looked at the front pages. He had remembered that several months earlier, his family had taken a trip through Europe and Lars had sat in the back seat looking at the maps. Now, several months later, without using any reference materials, Lars sketched out a replica of those boxes and numbers – without error.

That kind of memory and trait is something that many people with autism share – and it’s highly valued by lots of employers for jobs like software testing, programming, data analysis, data entry, and the like. I’ll let Thorkil speak about his mission, but I’m proud that his organization — Specialisterne — is based out of Delaware. And you will hear today from others who have been inspired by his work.

Working with Specialisterne, the giant IT firm SAP has committed to employ hundreds of people with autism over a few years. And CAI, another IT company based out of Delaware, has committed that three percent of its consultants will also be people with autism.

As a former business executive, when I meet the people hired through these initiatives on the job – people like Patrick Viesti of SAP – I see they are as focused and determined as you could ever hope an employee would be. Parents of the young people that find jobs call the opportunity a godsend for their children. It allows families to see a career path that wasn’t visible before when barriers that prevent people with autism from getting a job are removed. Thorkil’s success is proof that with leadership and determination, we can identify and fill jobs in areas in which people with autism excel.

Thorkil, as well as companies like SAP and CAI, should inspire us to take action. Through the National Governors Association initiative I mentioned, we outlined the actions that can make the most difference.  We called the project “A Better Bottom Line: Employing People with Disabilities.” That title was meant to focus attention on one of the key points of our initiative: employing people with disabilities makes good business sense. As many CEOs involved in our initiative emphasized, employing people with disabilities is better for their business’s bottom line.

Focusing on employment of people with disabilities is also smart for government.  It is a workforce competitiveness issue. It is part of preparing for an aging workforce and meeting the needs of business for skilled workers. And it’s reducing the reliance of this population on government assistance while taking advantage of what they can contribute to their communities.

Our NGA Blueprint offers these five recommendations: First, making employing people with disabilities part of the broader state workforce strategy; Second, we must find and support more businesses who hire people with disabilities; Third, government must be model employers of people with disabilities; Fourth, we must prepare youth with disabilities for the workforce including through promoting opportunities for internships and career exploration; and fifth, we must make the best use of scarce resources to advance employment opportunities for people with disabilities.

I’m proud that in the State of Delaware we are following through on a commitment to address employment in our efforts to support the disabilities community. In July, 2012 I signed the Employment First Act (HB 319) legislation to further help open the door for people with disabilities to work side-by-side with other employees. It encouraged State agencies to give people with disabilities more choice and more independence seeking competitive employment as their first and primary option toward independence. Today, more than 20,000 Delawareans are contributing, are engaged in their communities, and have purpose like never before.

Employing people with autism and other disabilities is simply a win-win-win situation. It makes good sense economic sense for business, it helps government improve the competitiveness of the workforce, and it transforms the lives our citizens who often want nothing more than to use their skills to contribute to society.

I applaud companies like SAP, CAI, Walgreens, and so many others represented here. You are setting an example of what is possible in workplaces around the world, both through the commitments you’ve made and because of the awareness they are raising.  To the larger business community, and to companies needing IT help in particular, remember that the commitment you are being asked to make today is not in response to a request for charity.

We absolutely can greatly increase the number of people with autism and other disabilities in the workplace, but to address this challenge on a large scale, we need everyone to do their part. Let’s not make this someone else’s problem to solve. Today, let’s take responsibility for what we can change and let’s give millions of people with autism the opportunities they deserve.

Sneak Peak: Return to the Kingdom of Del, A Tale Of Christina #netde #eduDE @KilroysDelaware @ed_in_de

While Jon was dealing with his issues in the county of Kent, far away in the Kingdom of Del, up north and past the canal, lived a very special child in the county of Novus Castrum.  Within the walls of Novus Castrum, there were several districts, and the largest of them was Christina.  Many schools were housed within these borders, and many citizens of the Kingdom of Del lived in this area.  There were many schools for parents to choose, so the area became known for it’s many public schools and charter schools.  For the little girl named Maria, the choice was not so simple for her parents.  Maria’s loving mother and father knew she was very different from many of the other children her age.  You see, Maria was diagnosed as autistic.

This is the story of Maria’s journey, which isn’t over yet.  While Maria didn’t attend a charter school like Jon did, she did attend many different schools.  This is a story of impossible choices for Maria’s parents, Maria’s struggles, neglect, communication, and tragedy.  Maria and Jon have some things in common.  They were both children of the kingdom who lived their life with disabilities.   The tales are very similar, yet vastly different.  Words like inspection, fape, dap, special education, feeder, and communication all are very important to Maria’s story.  It’s a story of two parents attempts to get the best services for their daughter who had a very difficult disability and needed extra care and support.  Did she receive that?

To Be Continued….

Feds Increase Benefits For Autism, Major Win For Advocates

On July 7th, Federal officials ruled that all states must increase Medicaid coverage for autistic children.  This will now include Applied Behavior Analysis, speech therapy, physical therapy, occupational therapy, medical equipment, and personal care services.  Previously, many states Medicaid denied these types of services, and the lawsuits grew.

According to the feds, every state must include these services in what is known as the Early and Periodic Screening, Diagnosis and Treatment Program (EPSDTP).  Every state must provide these services from birth to 21.  For parents of autistic children and their advocates, this is a huge victory.  This puts national standards ahead of what the states cherry pick in terms of services.

The new guidelines are posted on the Centers for Medicare & Medicaid Services (or Medicaid & CHIP services): http://www.medicaid.gov/Federal-Policy-Guidance/Downloads/CIB-07-07-14.pdf

The link goes on with an estimate from the Centers for Disease Control (CDC) that 1 in 68 children have autism, so the new guidelines come at a critical time for American families.

A Father’s Powerful & Extremely Personal Thoughts on Parenting

When I started my own blog, I didn’t know a lot about autism. I still don’t. My first experience with it was the series finale of St. Elsewhere. The series ends with an autistic child, who we have seen on the show before, but with a different character as his father. His father is not a doctor in this reality, but a construction worker. The autistic boy is looking at a snow globe of a hospital called St. Elsewhere. We are left with the impression that the autistic boy imagined the entire series in his mind.
I happened upon this post through Twitter, where I have been trying to educate myself with all disabilities. This post rang very true with me, as I have my own struggles in dealing with a child with Tourette’s Syndrome, ADHD, OCD, Sensory Processing and more. God bless this father for saying the words we all should be saying.

Emma's Hope Book

*This was what my wonderful husband, Richard, wrote as a comment on my post the other day.  I asked him if I could make it a post all on its own.  He gave me permission…

“Pain is inevitable, suffering is optional.”

There are plenty of difficulties in life. Parenting is hard, but “childering” is harder. Parents usually have some experience in navigating the complex social expectations of the world. Children must gain that experience with each passing day, hopefully with the guidance, support and unconditional love of parents who put their children’s needs ahead of their own.

But there are a lot of parents who aren’t like that. Mine for example. I was taught from birth that my obedience and subservience were more important than my own needs and desires, or personal considerations. When I didn’t do what I was told to do, or didn’t do it fast enough with a “good attitude”…

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Isolation

I know many parents who feel like this. It’s a sad part of life when you have a child with high functioning autism. The best thing I can recommend to any parent is to remember you have to take care of yourself. This is one of the most important things I learned from a support group I attend for special needs parents. Because if you aren’t in good shape, how can you be at your best for your child? I don’t think ANY parent can be there at 100%, all the time. For a brief time, I knew exactly what this parent was going through, and it is a very dark place to be. I pray that all parents going through this can find a semblance of hope in the darkness and learn to see how beautiful life can be.

Autism & Oughtisms

One of the most enduring experiences for me as the mother of an autistic child, is a deep and growing sense of isolation. No, not just a sense, a reality of isolation. There was a time when the reality was devastatingly obvious to anyone who knew me, because I couldn’t talk on the phone or in person or have anyone around the home if my son was around, and my son was almost always around because he was so hard for others to look after. My son would violently attack me or others if I tried to communicate – or at times, even be in the same room – as others. Now, with his autism affecting him less severely, the isolation is just as real, but subtle and so much harder for others to understand, and that inability to make others understand becomes itself further isolating.

I reached a point recently…

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Parent Opt-Out Legislation for Severely Cognitively Impaired Students Passed by Senate, House Bill 229**Updated** #netde #edude

This bill would allow for students with either autism, multiple disabilities or a moderate or severe intellectual disability to potentially be opted out of state standardized assessments.  But the caveat here is only the parent can request it.  In lieu of the standardized test, a parent would request a “portfolio review” to show student progress.  No member of a school or IEP team can request this.  Another key part is the child must have an IQ of 50 or less.

Another important part attached to this bill deals with children with dyslexia or an inability to read by the age of 7.  The way it is worded is a little bit confusing.  It looks to me like if a child isn’t reading by age 7 they should have an IEP.  As well, it pretty much says those children would have automatic Extended School Year services in their IEP unless there is  a major reason for not having those services is written into the IEP.

This does not take away the emergency opt-out clause, for students who have a major, sudden illness right before the test.

I don’t think they wanted to pass this bill until HB 334, which allows for Smarter Balanced Assessments to take over DCAS, was passed.  This passed 20 minutes after HB 334 passed.  How children will do on the Smarter Balanced Assessments is very much up in the air.  Other students with disabilities may see something familiar in a year if they don’t do well on that test.

UPDATED, July 1st, 2014, 3:55pm

After careful review of this bill, does it really say what it is meant to say?  The key is in the amendments and the exact wording.  The parent can request the portfolio assessment, but it has to be agreed on by the IEP Team, the school superintendent OR charter school leader will make the decisions regarding the style of the portfolio.  And if a school requests too many? Then the DOE steps in who will already be deciding the nature of the portfolio assessments.  So what does this bill do for these students that they don’t already have?  It looks like they will be counted for the participation rate for schools whether they take this or the SBA.

SPONSOR:	Sen. Poore & Sen. Hall-Long & Rep. Longhurst & Rep. Q. Johnson & Rep. Ramone & Rep. M. Smith
	Sens. Blevins, Bonini, Bushweller, Ennis, Henry, Marshall, McBride, McDowell, Peterson, Pettyjohn, Sokola, Townsend, Venables; Reps. K. Williams, Jaques

DELAWARE STATE SENATE, 147th GENERAL ASSEMBLY

SENATE BILL 229

AN ACT TO AMEND TITLE 14 OF THE DELAWARE CODE RELATING TO THE EDUCATION OF STUDENTS WITH DISABILITIES

WHEREAS, under current Delaware law as interpreted by the Department of Education, all students are required to take a standardized assessment at regular intervals regardless of the nature of their cognitive disability, unless the student is suffering from extreme illness or injuries or has recently experienced severe trauma; and

WHEREAS, this requirement of state law often compels students who in the opinion of medical experts are literally unable to produce valid results on these tests to nevertheless sit for the tests; and

WHEREAS, some Delaware students with severe cognitive disabilities are currently required to take statewide standardized assessments over the objections of their own parents and teachers; and

WHEREAS, mandating that students with severe cognitive disabilities who are clinically incapable of producing valid results on standardized assessments can be harmful to those students; and

WHEREAS, teachers who now attempt to prepare such students for standardized assessments would prefer to use their classroom time to convey skills or information that their students could put to use in a vocational setting; and

WHEREAS, a limited number of young students in Delaware have dyslexia and other disabilities that severely limit or prevent them from decoding text; and

WHEREAS, the state should ensure that school districts and charter schools are being appropriately diligent about providing early, evidence-based interventions to these students so that they can learn to read;

BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF DELAWARE:

Section 1.  Amend Chapter 1, Title 14 of the Delaware Code by making deletions as shown by strike through and insertions as shown by underline as follows and by redesignating accordingly:

§ 151 State assessment system; rules and regulations.

(j) Notwithstanding any other language in this Title, a student who has a measured intelligence quotient of 50 or less, has been formally classified as having one of the three following conditions, and whose parents or guardians, and IEP team, and school district superintendent or charter school leader believe will not produce valid results on either the standard or alternate assessment, shall be granted a special exemption from taking either assessment. The definition of each of the following three conditions shall be the same that is in effect on the date of passage of this Act in Title 14, Section 922 of the Delaware Administrative Code.

(i) Autism;

(ii) Multiple disabilities;

(iii) An intellectual disability.

The Department of Education shall promulgate regulations establishing a procedure for the review and approval of special exemptions requested under this subsection (including acceptable means of measuring intelligence quotient) and for further reviews of individual schools and/or school districts that request an unusual number of special exemptions.   The Department of Education shall also promulgate regulations providing for a method of measuring academic progress by students receiving a special exemption from the state’s assessment, which shall provide objective criteria by which student progress can be planned and measured and shall be developed in consultation with the Governor’s Advisory Council on Exceptional Citizens. Students who are granted a special exemption under this subsection shall not be included in the participation rate calculation for schools and school districts.

Section 2.Amend Section Chapter 31, Title 14 by making deletions as shown by strike through and insertions as shown by underline as follows:

§ 3110 Rules and regulations.

(e) With respect to any child with a disability who is not beginning to read by age seven, each IEP prepared for such student until that student is beginning to read shall (a) enumerate the specific, evidence-based interventions that are being provided to that student to address the student’s inability to read, and (b) provide for evidence-based interventions through extended year services during the summer absent a specific explanation in the IEP as to why such services are inappropriate.

Section 3.It is the intention of the General Assembly that $500,000 of the funds appropriated by Section 189 of House Bill 200 of this General Assembly shall, if such funds are reappropriated by a subsequent General Assembly, be specifically designated beginning July 1, 2015 for the annual provision of regional evidence-based summer reading instruction for students who are not beginning to read by age seven.

Section 4.The provisions of this Act are severable, and a finding that any individual provisions or sections are unenforceable shall not prevent enforcement of all other provisions.

SYNOPSIS

Section 1 of the Act would permit the state’s students with severe cognitive disabilities, with the consent of their parents, IEP teams, and school districts, to receive special exemptions from taking either of the state’s standardized assessments. The academic progress of those students would still be measured in order to ensure that they are being challenged and provided meaningful instruction.   Sections 2 and 3 of the Act attempt to ensure that evidence-based interventions are provided for young students who have dyslexia and related disabilities, to ensure that they are receiving necessary assistance in learning to read.

Author: Senator Poore

With Senate Amendment #2

AMEND Senate Bill No. 229 by deleting lines 20 through 36 in their entirety and substituting in lieu thereof the following:

“(j) Notwithstanding any other language in this Title, a student who has been formally classified as having one of the following four conditions, and whose parent, IEP team, and school district superintendent or charter school leader believe will not produce valid results on either the standard or alternate assessment despite accommodations and adjustments, shall receive his or her alternate assessment through consideration of work samples, projects and portfolios, which facilitate authentic and direct gauges of student performance with respect to both relevant state standards and the student’s IEP (a “portfolio assessment”). The definition of each of the following four conditions shall be the same that in effect on the date of passage of this Act in Title 14, Sections 922 and 925 of the Delaware Administrative Code:

(i) Moderate Intellectual Disability

(ii) Severe Intellectual Disability

(iii) Autism, accompanied by intellectual functioning equivalent to Moderate or Severe Intellectual Disability

(iv) Multiple Disabilities, accompanied by intellectual functioning equivalent to Moderate or Severe Intellectual Disability.

The parents of a student classified as having one of these four conditions shall be informed of their child’s rights under this section, but no IEP team, school or school district shall advocate that parents exercise those rights. Only a student’s parents may initiate a portfolio assessment request under this Section, and when such a request is made, the student’s IEP team and school district superintendent or charter school leader shall make their determinations regarding the portfolio assessment within 60 days of said request. The Department of Education shall promulgate regulations establishing a procedure for the design and evaluation of portfolio assessments requested under this subsection and for further reviews of individual schools and/or school districts that request an unusual number of portfolio assessments. The Department of Education shall also promulgate regulations providing for a method of measuring academic progress by students receiving a portfolio assessment under this section, which (i) shall provide objective criteria by which student progress can be planned and measured, (ii) shall be developed in consultation with the Governor’s Advisory Council on Exceptional Citizens, and (iii) shall satisfy the requirements of 20 U.S.C. § 1412, 20 U.S.C. § 6311, and any other applicable federal laws or regulations. Students who are granted a portfolio assessment under this subsection shall not be included in the participation rate calculation for schools and school districts.”

FURTHER AMEND Senate Bill No. 229 by adding the following to end of line 36: “Nothing in this subsection shall be construed to limit the authority of the Department to approve exemptions from assessments for students not covered by this subsection.”

FURTHER AMEND Senate Bill 229 by adding a new Section 5, to read as follows:

“Section 5. All regulations required by this Act shall be promulgated by the Department of Education within 90 days of enactment into law, and shall be subject to the approval of the State Board of Education and any entities required by federal law.   The process authorized by Section 1 of this Section shall not begin until it is approved pursuant to this Section, and the Secretary of Education shall report to the General Assembly every 90 days beginning 90 days after enactment of this Act into law with respect to the Department’s progress in fulfilling its obligations under this Act.”

SYNOPSIS

This amendment makes six changes to Senate Bill 229.   First, it amends the terminology in Section 1 of the bill to adopt existing definitions and standards from existing Department of Education regulations rather than creating new definitions and standards. Second, it clarifies that students covered by this Act will still have their academic progress assessed, but by a means other than the existing DCAS alternate assessment.   Third, it limits to parents the right to initiate requests under this section, and establishes deadlines for schools and school districts to respond to such requests. Fourth, it clarifies that any regulations promulgated by the Department of Education must be consistent with existing federal law governing assessments. Fifth, it establishes deadlines for the Department of Education to promulgate regulations relating to this Act and clarifies that those regulations are subject to approval by the State Board of Education and federal agencies. Finally, it clarifies that the Department of Education’s existing authority to grant special exemptions for circumstances such as sudden, severe illness are not impacted by this legislation.

Another Task Force! SCR 65: Autism Educational Taskforce

I hope all these Senate Concurrent Resolutions do some worthwhile fact rendering and important legislation comes out of it.  There is no time like the present for improvement!

 

SPONSOR:	Sen. Henry & Sen. Townsend
	Sens. Blevins, Ennis, Hall-Long, Lopez, Poore, Venables; Reps. Baumbach, Bennett, Brady, Briggs King, Dukes, Gray, Hudson, Jaques, J. Johnson, Kowalko, Osienski, Ramone, B. Short, D. Short, Smyk

 

DELAWARE STATE SENATE 147th GENERAL ASSEMBLY

 

SENATE CONCURRENT RESOLUTION NO. 65

 

CREATING AN AUTISM EDUCATIONAL TASK FORCE.

WHEREAS, the University of Delaware’s Center for Disabilities Studies conducted a comprehensive statewide appraisal of the ongoing needs of Delawareans with autism spectrum disorder (hereinafter “ASD”); and

WHEREAS, a summit was held inviting a diverse group of stakeholders involved in the lives of individuals with ASD that provided the opportunity to express individual perspectives or concerns regarding the Blueprint; and

WHEREAS, the Delaware Department of Education (hereinafter “DDOE”) provides valuable education opportunities and services to students with disabilities; and

WHEREAS, the state of Delaware has a history of providing a groundbreaking and innovative, evidence-based education program for students with ASD; and

WHEREAS, students who have an ADS function at many different and individual cognitive levels; and

WHEREAS, the conclusions found in the Blueprint regarding the educational needs of students with ASD show that there are areas needing improvement.

NOW THEREFORE:

BE IT RESOLVED by the Senate of the 147^th General Assembly of the State of Delaware, the House of Representatives concurring therein, that an Autism Educational Task Force (hereinafter “Task Force”) is established to study the Blueprint to prioritize and make recommendations regarding the initiation of Educational and Technical Assistance Teams and a statewide Autism Resource Center, and to research appropriate funding streams to enable the creation and implementation of these two programs.

BE IT FURTHER RESOLVED that the Task Force shall be composed of the following members:

(a)   One member of the Delaware State Senate appointed by the President Pro Tem; and

(b) One member of the Delaware House of Representatives appointed by the Speaker of the House; and

(c) Two parents of an individual with ASD, from a variety of age groups and geographic areas, one to be appointed by the Chairman of the Senate Education Committee, one to be appointed by the Chairman of the House Education Committee; and

(d) Two individuals personally affected by autism one to be appointed by the President Pro Tem, one to be appointed by the Speaker of the House; and

(e) A private service provider for Delawareans with ASD to be appointed by the Delaware Secretary of Health and Human Services; and

(f) The Secretary of the Delaware Department of Education or a designee thereof; and

(g) The Secretary of the Delaware Department of Health and Social Services (DHSS) or a designee thereof; and

(h) The Secretary of the Delaware Department of Services for Children, Youth, and Their Families (DSCYF) or a designee thereof; and

(i)   The Secretary of the Delaware Department of Labor (DOL) or a designee thereof; and

(j) The Executive Director of Autism Delaware or a designee thereof; and

(k) The Executive Director of the Delaware Parent Information Center or a designee thereof; and

(l) The Director of the Delaware Division of Developmental Disability Services (DDDS) or a designee thereof; and

(m) The Director of the Delaware Division of Public Health (DPH) or a designee thereof; and

(n) The Director of the Delaware Birth to Three Early Intervention System or a designee thereof; and

(o) The Director of the University of Delaware’s Center for Disabilities Studies (CDS) or a designee thereof

(p) The Statewide Director of the Delaware Autism Program or a designee thereof; and

(q) The Board Chair of the Delaware Autism Program Peer Review Board or a designee thereof.

BE IT FURTHER RESOLVED that the Task Force shall convene its first meeting no later than 60 days after enactment. The member of the Delaware State Senate appointed by the President Pro Tem shall serve as the chair of the Task Force, and shall convene the first and subsequent meetings.

BE IT FURTHER RESOLVED that the Department of Education shall provide staff and fiscal support for the Task Force.

BE IT FURTHER RESOLVED that the Task Force shall submit a report of its findings and recommendations to the General Assembly to be reviewed by the Senate Education Committee and the House Education Committee on or before March 31, 2015.

SYNOPSIS

This resolution establishes an Autism Educational Task Force.

Author: Senator Henry