Yesterday I received an alert from Wrightslaw about the Keeping All Students Safe Act (S.2020). This was an action alert calling on everyone to contact our Senators asking for their support for the act. Here is an excerpt from the call to action:

Please email your Senators and ask them to cosponsor the Keeping All Students Safe Act (S.2020).

This bill will protect children nationwide from restraint and seclusion in schools.

The need for this legislation is exemplified yet again in a horrific situation in Middletown, CT regarding the use of school seclusion rooms.

The situation described by parents and students in this report is horrific and abusive. Aptly termed “scream rooms” in this media report, such seclusion rooms are exactly what the Federal bill, S. 2020, pending in the Senate seeks to eliminate.

Senator Tom Harkin (Chair, Health Education Labor and Pension Committee) introduced S. 2020 in December. The bill would ban physical restraint except in emergency situations when there is an immediate threat of serious bodily injury.

The bill bans seclusion (confinement) of children in locked rooms or rooms from which they cannot exit. It bans life-threatening restraint that interferes with breathing or the ability to communicate, and mechanical and chemical restraints. It requires schools to notify parents within 24 hours of restraint.

For more information, read the entire Wrightslaw Keeping All Students Safe Act (S.2020) Action Alert.

If you’re new to the special education world then you may be wondering what an IEP (Individualized Education Plan) is. Thankfully Kim Yamamoto, founder of Arizona Advocates, took some time to record this short four-minute video to introduce you to IEPs. Kim is local to me and is one of the most well-respected and recommended educational advocates I’ve seen mentioned in autism circles. Thankfully I’ve never ran into a situation where I needed an advocate but I certainly know who I will be calling if that day ever comes.

I received the following Action Alert via the Wrightslaw Special Ed Advocate newsletter and I wanted to pass it on to all of you. Although this isn’t autism specific, it could affect all children with disabilities.

Do not allow schools to lower the academic expectations for students with disabilities.

On October 19th, Senator Isakson (R-GA) is expected to offer an amendment to No Child Left Behind during Senate Committee consideration of the Elementary and Secondary Education Reauthorization Act of 2011.

The amendment, S 1571, would discriminate against students with disabilities by allowing schools to significantly lower the academic expectations for students, based on their scores in state accountability tests. This use of this test, for this purpose, would apply only to children with disabilities.

Tell your Senator to vote NO on the Isakson Amendment.

S 1571, the Isakson amendment:

• would provide additional remediation to a student who scored poorly on the state accountability test, unless that child had a disability.
• would remove the limits on how many students with disabilities can be counted as making sufficient progress using less challenging systems of standards and assessments.
• would allow schools to take millions of students with disabilities off track for a regular high school diploma as early as 3rd grade, simply because they receive special education services.

Read this summary by Wrightslaw Research Editor Sue Whitney, S1571 Proposed by Senator Isakson Would Discriminate Against Children with Disabilities.

For more information: ALERT! Tell Your Senator to Vote NO on the Isakson Amendment.

The 2011-2012 school year is officially underway and I now have a second and fifth grader!

If you’ve followed my blog for any amount of time then you’re aware that my family recently moved. The new district follows a modified year-round schedule, which means that the first day of the 2011-2012 school year is on Monday. Yes, Monday, July 25, 2011.

Today I took the kids down to the school to take a tour before the chaotic-ness known as Meet the Teacher Night starts. We still head on over to the school on Meet the Teacher Night but since this is a new school, I wanted the kids to have an opportunity to take a tour under more quiet circumstances. The teachers weren’t even there yet, but we did get to meet the school Principal.

So things are going to be crazy busy around here for the next few weeks. This week we’re preparing for back to school and then we get to deal with transition time, which is always good for some laughs and some cries.

To help you get into the back to school spirit, check out these related articles:

• Back to School Time and Autism
• Picture Schedules Ease Back to School Transitions
• A Look at Autism and Inclusion
• Homeschooling Your Child With Autism or Asperger’s Syndrome

Photo: MyTudut/Flickr

A new school for students with autism is opening in the San Francisco Bay Area this fall (2011). The school is located on Peninsula Avenue in San Matea and it has been added to my California Autism Schools page.

Our Non-Public School will provide students with the most appropriate environment and highest quality of individualized education in which they may learn and generalize their skills. Through emphasis on the student’s strengths and talents, we encourage self-expression, self-efficacy and independence. The Bay Area Achievement School supports our students’ ability to work cooperatively and collaboratively with their peers to develop greater social skills.

Bay Area Achievement School serves children Kindergarten through 6th grade (ages 5-14) on the Autism Spectrum, as well as children whose behavior and/or disabilities impede learning in a traditional school environment. The Bay Area Achievement School works closely with the child’s home district to provide intensive educational and behavioral interventions that will help students access the skills required to return to a less restrictive environment.

At Bay Area Achievement School, we recognize the importance of adaptation of curricular materials in order to meet the individual needs of our students as well as developing teaching methodologies that work with the strengths of our students. Our students will thrive in a highly individualized teaching environment, with a 2:5 ratio, with a fully credentialed moderate-severe teacher and highly-trained paraprofessionals.

Bay Area Achievement School
424 Peninsula Avenue
San Mateo, California 94401
Phone: (650) 286-4396 xt. 113

I’ve added the Jordan Lake School of the Arts to my North Carolina Autism Schools page.

About the school:
Jordan Lake School of the Arts offers an advanced liberal arts program with a special focus on the arts and outdoor education. The arts allow an in depth exploration of our subjects as well personal expression. The learning environment at JLSA is inclusive, mixed age classes with a low 5:1 student to teacher ratio. We serve all types of students but specialize in inclusion of the gifted, out of the box thinkers, and those on the autism spectrum. Source: JLSA

Jordan Lake School of the Arts
1434 Farrington Road
Apex, North Carolina, 27523
Phone: (919) 387-9440
Email: contactjordanlakesacom

When parents participate in an IEP meeting, they’re often given a document called Procedural Safeguards. It may seem like such a small part of the sometimes overwhelming mounds of IEP paperwork that you might be tempted to ignore it. But don’t. Tucked within the Procedural Safeguards is an important tool called Prior Written Notice.

What is Prior Written Notice?
Prior Written Notice, or PWN, is a written record of certain decisions made by the school that impact your child’s education. Whenever the school changes your child’s special education program, or refuses a parent’s request to provide services, PWN (or PWNR – Prior Written Notice of Refusal) must be sent to the parents.

The federal law states Prior Written Notices must be sent before the school initiates any changes, or within a reasonable amount of time if a request is denied. The actual amount of time allowed differs according to each state’s law, and should be stated within the Procedural Safeguards.

Why is PWN Important?
For starters, it allows parents to be better involved in their child’s education by providing detailed information about school decisions. Since it’s in writing, it creates a record – a paper trail – of decisions made that can be used in a legal proceeding if parents decide to pursue a due process hearing. Finally, PWN discourages decisions made subjectively, too quickly, or those made with prejudice.

What’s Contained in PWN?
Here’s a scenario: your child is in his first year of middle school and his social skills challenges are interfering severely in his ability to interact appropriately in class and with his peers. You call an IEP meeting to discuss the possibility of the school incorporating regular social skills training into his program. By the end of the meeting the school denies your request.

The PWN should include all the following pieces of information about what the school is either proposing – or in this case, refusing – to do. Read these seven PWN criteria carefully; they are powerful tools IDEA set up to make schools accountable for their decisions:

• Description of the action proposed or refused by the school.
• Explanation of why the school wants to initiate action or why they refuse the request.
• Statement about what other options were considered, including all ideas contributed by IEP team members, including parents, and why they were rejected.
• List and description of all evaluations, tests, records, or reports the school used to make their decision. (Decisions must be based on data and assessments, not on money, lack of staff, or subjective comments on the child’s perceived ability.)
• Description of all other factors that were relevant to the school’s proposal or refusal.
• Notice to the parents that procedural safeguards are available and how to get them.
• Statement about whom the parents may contact to get help in understanding their rights under IDEA.

Can Parents Request PWN?
Parents most definitely can – and should – request PWN if 1) you learn the school has made changes in your child’s services or special education program without first sending PWN; or 2) anyone from the school informed you of changes being made in your child’s program either in person, at a meeting, or over the phone.

Be sure you make your own request in writing. Remember the experienced words of Pete Wright from www.WrightsLaw.com, “If it was not written down, it was not said. If it was not written down, it did not happen.” This is why it’s so important to be sure you receive PWN, and to put any requests you make – whether for PWN or services – in writing.

The National Dissemination Center for Children with Disabilities (NICHCY) offers a publication at www.nichcy.org called “Communicating with Your Child’s School Through Letter Writing.” This informative document shows a sample letter you may copy for requesting PWN.

PWN Tips
In How to Use a Parent IEP Attachment (WrightsLaw.com), Judy Bonnell recommends creating a simple form to help you keep track of all requests and changes addressed by the IEP team. Bonnell’s form includes columns for proposal, accepted, rejected, reason accepted or rejected, start date, and responsible person. You’ll also find a printable “Record of Proposals” at www.SpecialNeedsAdvocate.com/proposal_record.htm.

PWN as a Proactive Tool
Under IDEA law, the IEP team must formally consider – and accept or reject – any suggestions made by a team member. This means that parents may present their proposals and they have the right, not only to a formal discussion of the proposal, but also an explanation from team members about its merits, shortcomings, and other options. Most importantly, these discussions and decisions fall under PWN requirements. Either take a PWN form with you to the meeting and fill it out as the discussion unfolds, or follow-up with a written request for PWN afterwards. Make PWN an ally as you advocate for an appropriate education for your child.

Find more practical, proactive articles like this one in every issue of the Autism Asperger’s Digest. Six issues per year, just $29.95. Learn more at www.AutismDigest.com.

Excerpt reprinted with permission from a featured article in the May/June 2011 issue of Autism Asperger’s Digest magazine. Learn more at www.AutismDigest.com.

Copyright © 2011 Autism Asperger’s Digest. All Rights Reserved.

Photo: valur

A Parents’ Guide to Extended School Year Services

By Marie Jackson

Images of long summer days filled with picnics, swimming, walks on the beach, and fun-filled family outings start filling everyone’s head this time of year, as winter recedes and the sun shines longer each day. There is something so comforting about knowing that soon the demands of school schedules, homework, meetings and therapies will cease and life will take on a different quality. Less hurried, less pressured. Soon it will be summer break.

Unfortunately for many students on the autism spectrum, summer is not, and perhaps should not, be mistaken as “time off.” While others may view it as rest – and downtime is certainly important for everyone – for children with autism, the summer break is an extended teaching and learning opportunity – one not to be overlooked by parents and IEP team members. Unfortunately, it often is.

What is ESY?

Extended School Year (ESY) is a legal term describing a period of services provided by the local education agency on days when regular school is not in session. ESY services are most commonly provided during the 8-12 week summer break, but ESY services can apply to weekends and other school holidays too – essentially any period where there is a break in a student’s Individualized Education Program (IEP).

What does this mean for students with special needs, and particularly, students with autism spectrum disorders (ASD)? The National Research Council’s report, Educating Children with Autism, clearly states in its opinion students with autism need a program with year round/12 month supports. Public schools providing an individualized program for a student with ASD, therefore, should once a year seriously consider whether or not ESY services are needed.

Actually, federal law mandates that this annual discussion take place within the IEP team. It falls on the shoulders of parents to initiate a request to discuss ESY services, and then come to the meeting educated and prepared with appropriate documentation as needed. Many IEP team members – administrators, teachers and service providers – are not educated on the legal aspects of ESY services, and can, in fact, present erroneous information. Some deny services outright without the team’s input. It’s up to parents to be well-informed and know their child’s rights.

Parents investigating ESY services for their child are usually met with strong school opposition: “We don’t offer a summer program.” “You must prove regression in your child for him to qualify.” “Our staff needs a break.” “We don’t employ a speech therapist/OT/PT over the summer.” These are all invalid and illegal reasons for denying ESY services. They may be understandable in light of budgetary and operational policies, but that doesn’t make them “right” in light of our children’s needs.

Administrators come to the ESY meeting wanting to reduce services and staff during the summer break. Teachers often need the break themselves. These logistical considerations are accompanied by others: having to define the word “appropriate” once again to fit a period of time not covered by the school year; struggling to find services outside the school district; creating a new schedule for a child dependent on consistency and predictability.

However, the bottom line is our students are afforded certain rights under federal education legislation, and ESY is one of them. Period. Schools who don’t “operate” during the summer are mandated to find outside services that will meet the ESY needs of the child. IDEA and court decisions may have determined ESY to be an important part of a student’s IEP, but for most of us there is a huge gap between this ideal and the reality most parents face. Change comes slowly in many districts.

So why even pursue ESY services? This is why: our goal (hopefully) is to provide students with ASD equal opportunity to learn academic, social and emotional skills that will allow them to become functioning and contributing members of society after graduation.

At minimum, we want the progress they made through the year to stay intact, so they come back to school able to use their newly acquired skills to continue learning in the next year. Students with ASD work very hard to make sense of their world. Their language/communication, social thinking and sensory challenges impede their learning. Their need for practice and repetition in order to learn skills and tasks that their neurotypical counterparts learn intuitively means they are already behind, even if they somehow “keep up” their grades from year to year.

For students with ASD, the extra instruction and learning time that ESY provides may be just the ticket for them to achieve a level of success that approaches or equals those of their typical peers.

Criteria for Determining ESY Services

Preparation for the ESY determination should begin early enough in the school year so that teachers can assemble the needed documentation, the meeting can occur, and if parents disagree with the school’s ruling, the parent has time to formally appeal the school’s decision before the summer break begins. Typically, schools hold ESY meetings beginning as early as March; May is late in the year to be discussing such matters.

Teachers should collect data pertaining to skills, behaviors, goals and objectives identified on the student’s IEP. Ideally, schools should measure a student’s functioning and progress at intervals during the year. Is there documented proof of progress or regression on IEP goals and objectives? Are there critical yet unmet IEP goals/objectives needed once school resumes in the fall? Are their emerging skills that if left unattended over the summer, will regress and need relearning in September? All children regress to some point during the summer. The question here is whether the loss of skills over the summer will be so great that it will take the student with ASD a significant amount of time (more than the 4-6 weeks generally accepted for typical students) during the next school year to regain or recoup these skills.

ESY services and programming must be appropriate and individualized to the child. Decisions are required to be made based upon peer-reviewed research, formal and informal assessments by teachers and parents, and the child’s documented progress (or lack thereof) in meeting the goals specified in the IEP for the school year.

Parents should not come to the meeting with an adversarial nature; neither should the school district. A partnership is needed, with both parties willing to negotiate and arrive at an ESY program tailored to the needs of the child.

In the past, schools used (and many still use) a single criterion to determine the need for ESY services: regression/recoupment. However, federal and state court decisions and responses from the Office of Special Education Programs in Washington, DC have demonstrated that no single criteria should be used to determine ESY eligibility. As far back as 1998, Dr. Nissan Bar-Lev, Special Education Director in CESA-7 in Green Bay, WI, outlined 7 standards (based on court rulings) schools must use in making the ESY determination:

1. No Single Criterion can be used as the sole qualifying factor for ESY services.
2. Regression/Recoupment. Regression refers to loss of knowledge and skills; recoupment is the amount of time it takes to regain prior levels of functioning. This standard asks IEP team members to gauge, based on empirical and qualitative data, the impact the summer break will have on skills acquired and knowledge needed by the child when school resumes. For some students with ASD, without the repetition and structure of the regular learning program, coupled with the child’s limited ability to recoup skills, the child cannot meet basic educational requirements in the typical 180-day school year. The IEP team must not just look at documented regression; it must also present predictive data on the child’s recoupment ability. Based on his learning profile, how long will it take this child to regain skills learned during the previous school year? If recoupment is more than for typical students, ESY services may be warranted.
3. Emerging Skills. Is the child developing critical new skills that may greatly increase his ability to learn and be self-sufficient? How will a break in intervention deter these emerging skills?
4. Nature and Severity of the Child’s Disability. Autism is considered a severe disability, but it’s also a spectrum disorder. Each child is unique. Children with severe disabilities are more likely to be involved in ESY programs, since their regression/recoupment abilities may be significant.
5. Notice and Timing. ESY programs must be discussed – in a formal IEP meeting – with enough time for parents to exercise their children’s rights to dispute under the law. Simply giving parents a brochure on ESY does not meet legal obligations.
6. Content and Duration of ESY Services. ESY services must be individualized and appropriate for each student, and include not just education, but related services, therapy, transportation, etc.
7. Ability of Parents to Provide an Educational Structure at Home. Can parents reasonably replicate the needed education and program structure at home during the summer months? If the answer is no, ESY services may be warranted.

Each of these standards must be explored within the IEP team meeting before an ESY determination is made. It is important that discussions be based on objective data, rather than opinions, especially as it relates to regression/recoupment.

The regression/recoupment discussion can be very complicated for a student with ASD, since the disability is not homogeneous. There are documented cases of lost skills in children with ASD, making the regression/recoupment discussion a very important area of debate. In our son’s case for ESY, we provide independent assessments and other needed research to substantiate our opinion for specific ESY services. This leaves the team to discuss the other standards and how they apply to an ESY program.

From year to year a student’s skills will change. Therefore, ESY services can be different from year to year. A child with ASD might qualify one year and not another. “Different” doesn’t mean diminished, inappropriate, or non-existent. Different might mean adding a summer autism camp, working on social skills in a day camp setting, adding some fun activities such as gymnastics, swimming or other physical activities to maintain critical physical abilities.

ESY is a chance for both parents and schools to use education creatively and find services that fit the child in many different environments.

A Matter of Balance

The decision to advocate for ESY services is not an easy one for a parent to make. There’s a delicate balance between educating our children appropriately and making structured learning their “life work.” Everyone needs a break, including our kids. In our case, we look at how successful our son has been on his current IEP goals, his past history of regression on skills, his current needs and the peer reviewed research in the areas we are looking to support during the break.

There’s a certain level of parent and child stress that accompanies ESY services: a different program, different therapists, new (and perhaps exciting) opportunities. Exciting or not, it is a change for our son and any parent with a child on the spectrum can attest that change is one of the scariest words for our families. It comes back to balance, and how you define that with your child and your family.

Summer days should be used for building family memories – long walks on the beach, camping out, building friendships, tag games in the backyard followed by a firefly round-up! There was a time when I wondered if our family would ever be able to enjoy a summer vacation based upon these ideals. We saw summer time as an opportunity to work towards closing the gap between peers, strengthening emerging educational and social goals, and preventing the loss of hard earned new skills. But, it is also an opportunity to slow down and enjoy family time together. To let our kids be kids. Being a strong, informed advocate for your child will go far in helping you and the child’s IEP team build a strong foundation of learning, whether that’s within the typical school schedule or via supplemental ESY services. Be informed, be strong, advocate as you need for your child’s best interests. But enjoy the lazy summer days with your entire family…and don’t forget to catch those fireflies!

BIO
Marie Jackson and her husband, Michiel, are the proud parents of Taylor (8) and Brandon (6). Brandon was diagnosed with autism in 2003. Since his diagnosis, Marie has become an active advocate for her family and community.

However, a few federal provisions take precedent:

• a public agency must ensure that ESY services are available as necessary to provide FAPE; states are required to have written ESY guidelines.
• the ESY determination can only be made by the IEP team, not a single individual.
• a school may not limit ESY to particular categories of disability
• a school may not unilaterally limit the type, amount or duration of ESY services (i.e. we only offer two weeks of ESY during the summer; we don’t offer ESY during the holiday break).
• ESY services must be provided at no cost to the parents of the child.
• ESY refers to not only special education, but also related services deemed necessary for the child (OT, speech, PT, transportation, etc.).

ESY services are written into the child’s IEP, and are composed of specific goals and objectives to be met during the ESY period. Also, certain rights accorded the child through IDEA still apply: FAPE (free, appropriate public education), LRE (services provided in the least restrictive environment), the use of evidence-based teaching methods, positive behavioral support plans, and services provided by “highly qualified” personnel. ESY is also available for students who qualify for services under Section 504 of the Rehabilitation Act.

Extended School Year is:

• Used to maintain critical skills and objectives that include but are not limited to academic, communication, social/emotional life skills, and/or independent functioning life skills
• Based on goals and objectives in the child’s current IEP
• Designed to maintain a reasonable readiness to begin the next school year
• Determined on a case by case, individualized basis, annually
• Provided in a variety of environments, including the home. Can also include special summer camps, center-based day programs, tutoring, life skills, vocational programs, etc.

Extended School Year is not:

• Used to develop new skills or to maximize educational opportunities for any student with disabilities
• The school’s traditional summer school
• Restricted by place, time, group settings, frequency, etc.
• A replacement or duplication of alternative community resources
• To make up for absences arising from vacation, medical absences, suspension or expulsion

ESY Court Cases helpful for parents and educators to review:

• Battle v. Commonwealth of Pennsylvania (1980)
• Lawyer v. Chesterfield School Board (1993)
• Reusch v. Fountain (1994)
• J.J. ex rel. J.D. v. Henrico County School Board 326 F.3d 560 (4th Cir. 2003)

Photo: scarletgreen/Flickr

The Individuals with Disabilities Education Act (IDEA) is the federal legislation that governs special education services in schools, including Individualized Education Plans (IEPs). While IDEA isn’t specific to children with autism, many children with autism are receiving services protected by IDEA. IDEA was last reauthorized in 2004 and it is expected that another reauthorization will be coming in the next year or two. In preparation for this reauthorization, several organizations have joined forces to sponsor the IDEA National Survey.

The following is a description of the survey:

The IDEA National Survey Project is sponsored by the National Center for Learning Disabilities, National Down Syndrome Society, Autism Society of America, Autism National Committee, and The Advocacy Institute. Our purpose is to study whether the playing field is level for children with disabilities and their parents, and whether their rights are protected.

The survey will examine whether parents are treated as equal partners in their children’s education. We ask questions about whether the rights of students with disabilities and their parents protected throughout the special education process, including IEP meetings, decisions about special education, evaluations and eligibility, and Due Process and Impartial Hearings. We also ask about inclusion and whether children with disabilities receive the education they need, or whether they are deprived of important services. We will be using your answers to compile a report about the experiences of parents and children with disabilities and these issues. See the survey Privacy Policy for more information.

All disabilities are welcome! The survey is not limited to the disabilities on which the sponsoring organizations focus. We are studying these issues as they affect all children with disabilities and special needs. We also have surveys for all members of the community.

There are several different surveys available including those for parents, for individuals who have been denied special education surveys, a survey for attorneys and other professionals as well as a self-advocate survey.

Please take a few minutes to fill out the survey and pass this information on to others.

Photo: Andy Ciordia/Flickr