A Parents’ Guide to Extended School Year Services from From Autism Aspergers Digest

I had access to two nice articles from Autism Asperger’s Digest which they said I could post. Both of which are quite interesting and informative.

David B., President and Found of Autism Advocacy and Technology News Zone, Inc. 4/29/11

Compliments of Autism Asperger’s Digest
Article originally appeared in the March-April 2008 issue

A Parents’ Guide to Extended School Year Services
By Marie Jackson

Excerpt reprinted with permission from the Autism Asperger’s Digest magazine, March/April 2008 issue. The Digest is offering a subscription special during April, to celebrate National Autism Awareness Month. Buy one year at $29.95 regular price and receive a second year for $15 – a 50% savings. Learn more at www.AutismDigest.com

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!

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.

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