A Quarterly Publication of the
Parent Network of the Capital Region
Winter 2009
Boy in red hat

Holiday Letter for Friends & Family

"Dear Family & Friends" was written for the purpose of it being sent to relatives and hosts of holiday gatherings who might need a crash course in what to expect from their guest with autism.  Click here to read the letter.
Annual Review Time: What to Expect

As the calendar turns to a new year, parents begin to contemplate their children's annual reviews that occur in the spring of each year.   The purpose of the annual review is for parents to meet with the Committee on Special Education to discuss their child's IEP for the upcoming year; to assess whether progress is being made and to determine what, if any changes are needed to the IEP and what additional services may be necessary to ensure that the student meets their annual goals as designated on the IEP.  While parents have the right to ask for a CSE meeting at any time during the year, the law requires that the CSE convene on each student with an IEP at least annually to discuss progress and plan for the upcoming year.

It is extremely important that parents not only attend the annual review meeting but that they actively participate in the discussion that takes place during the meeting so that they can ensure their child is getting the services he or she needs.  In order to be an active participant, parents need to spend some time preparing for the meeting in advance so they will be able to ask questions, raise concerns, participate in goal-setting and decision-making.  Below are some tips for preparing, participating and following up on annual review meetings:

Before the Meeting:

  • Review IEP prior to the meeting: You should receive a copy of the draft IEP at least 5 days before the meeting.  If you have not been sent a copy, contact the CSE chairperson and request a copy so you'll have adequate time to read it.  This will also give you time to call and ask questions or speak with specific service providers prior to the meeting.  You do NOT want to walk into that annual review meeting without having seen the IEP first!
  • Review any recent and relevant reports and evaluations: It is a good idea to review any recent evaluations that the school or outside evaluators have conducted on your child prior to the meeting.  Contact pertinent professionals and evaluators with specific questions prior to the meeting.
  • Create a list of questions, concerns:  While you are reviewing your child's IEP, it is a good idea to write down any questions, comments, ideas or concerns you have about the specifics of the IEP.  During the meeting itself, conversation can go in many directions and without a written list of items it will be easy to forget all of the things you wanted to discuss with the CSE.  It is also important to ensure that ALL of your concerns are addressed prior to the end of the meeting.
  •  Know your rights:  Parents need to know in advance of a CSE meeting, what their rights and those of their children are under the Individuals with Disabilities Education Act.  Now is a good time to pull out and re-read the procedural safeguards notice you should have received from the school district along with the meeting notice for the annual review.  You can also access the procedural safeguards on our website (add link). While trying to read and digest the actual education regulations may seem insurmountable, there are handbooks available that have streamlined the regulations and have made them much easier to read and understand.  Special Education in Plain Language is an excellent, user-friendly handbook for that purpose and is available from the New York State Special Education Taskforce at
  • Consider requesting additional time for the meeting:  It may be a good idea for you to submit a request in writing for at least an hour to an hour and a half for the meeting.  School districts have many annual review meetings to schedule and as such, may only typically allot 20-30 minutes per meeting.  If you believe more time will be needed to discuss your child, put your request in writing to the CSE chair.

During the Meeting:

  • Have your child participate: Encouraging your older child to attend his or her IEP meeting provides an opportunity for them to have a better understanding of their programs and services.  It also allows them to begin building self-advocacy skills that will be crucial during post-secondary education and adulthood.  Students age 15 and older need to be invited when transition planning is being discussed.
  • Actively participate and engage in dialogue:  Parents are the most crucial members of the CSE as they know their child's history, strengths and areas of need as well as being the constant members throughout their child's education.  While CSE meetings can be intimidating, it is important that you express yourself clearly and openly.  If the discussion becomes heated, remain calm, try not to become emotional and ask for a break to collect yourself and your thoughts if you need to.
  • Be flexible and creative:  While parents may have set opinions on how their child's needs should be addressed, it helps to keep an open mind, be flexible and creative.  Be willing to work with the CSE cooperatively and consider other opinions and solutions from other team members.
  • Bring support: It can be extremely helpful to bring along a spouse, relative or friend who knows your child.  This person can help you stay on track, keep your cool and take notes for you.  This will free you up to be a full and active participant in the meeting. 
  • Say Thank You!

 After the Meeting:

  • After the meeting: Send a follow-up letter immediately to confirm what was discussed at the meeting.  Be sure to include in your letter everything that was agreed upon and note anything that requires follow-up, who is responsible, and when it will be accomplished.  Request minutes from the meeting if you haven't received them.
  • Review final IEP:  When you receive a final copy of the IEP that was developed as a result of the annual review meeting, make sure you review it carefully and that it reflects everything that was discussed and agreed upon at the meeting.  If there are things in the IEP that you disagree with, send a letter to the CSE chair.

ADA Amendments & Impact on Section 504

As a result of the 2009 amendments to the Americans with Disabilities Act in 2009, more people with disabilities will be entitled to the coverage and protection of the Section 504 of the Rehabilitation Act.  In the past, the courts had interpreted the ADA very narrowly and, some argued, in a manner which was inconsistent with the original intent of Congress.  The 2009 amendments address the courts' limited interpretation by expanding the definition of who is considered a person with a disability.

ADA & Section 504 of the Rehabilitation Act

Both the ADA and Rehab Act are federal Civil Rights laws acts that ensure people with disabilities are not discriminated against.  Section 504 applies to all programs that receive federal funding which includes public schools, colleges, universities as well as state and local government programs and public entities like libraries.  Therefore, section 504 protects students with disabilities from discrimination in public schools and all private schools which receive federal funds.  The law requires that schools provide additional supports, services and accommodations for students with disabilities to ensure they have equal access to all educational programs and opportunities to the same extent as their non-disabled peers.  Because the ADA amendments of 2009 included a conforming amendment to Section 504, changes that were made to the ADA also extend to Section 504.

The 2009 Amendments

So what exactly were the ADA amendments and what impact will they have on Section 504?  While the actual definition of disability did not change, some of the meanings of the terms used in the definition were re-defined.  Under the ADA, the definition of a disability is as follows (the bolded terms were altered by the amendments to open up coverage of the law):

"Disability- The term 'disability' means, with respect to an individual-

(A)A physical or mental impairment that substantially limits one or more major life activities of such individual;

(B)A record of such an impairment; or

(C)Being regarded as having an impairment."

Previously, the "substantially limits" standard had been too high. In determining whether a person had a disability as defined by ADA, 'mitigating measures' (such as medication, equipment, assistive technology, accommodations, etc. used to alleviate the impact of a disability) were taken into consideration. If an individual could function normally with the use of one of these 'mitigating measures', then it was unlikely he or she would be considered disabled and entitled to the protections of the ADA and Section 504.   The ADA amendments of 2009 bar consideration of mitigating measures (except for ordinary eyeglasses and contact lenses) when determining if a person is disabled under these laws.  

In addition, the phrase "major life activities" was also expanded to include 'major bodily functions', including, for example, disorders of the immune, respiratory, circulatory and endocrine systems as well as neurological and brain functions (this is not an all-inclusive list).  Conditions that were episodic or in remission also may not have previously been covered by the ADA but the amendments addressed this by adding language that would make it a covered disability if the condition would impact a major life activity in its active state. 

Finally, the ADA amendments broaden the meaning of 'regarded as' to include individuals who were discriminated against by an employer who perceived the individual as having a disability, even if he or she is not disabled. For example, if an employer denies employment to an individual because the employer is aware of a prior injury or condition, the decision not to hire could be considered discrimination under the expanded definition if the employer did not assess what the applicant's current capabilities and whether he or she is able to perform the necessary job duties.

The ADA amendments also indicate that only individuals who meet the first and second parts of the definition (disability and record of such a disability) are entitled to reasonable accommodations.    Once a disability has been established, accommodations must be provided for any limitation, not just those that are directly tied to the "substantial limitation" of the disability.

Impact on Students

So, how exactly might these amendments impact students?  It is likely more students may be eligible for 504 plans and accommodations, especially those with disabilities related to disorders of neurological and brain functions such as learning disabilities and ADHD since these have now been added as "major bodily functions".  ADHD medications or and other mitigating measures can no longer be considered when making a disability determination.  Schools must look at the student's functional level as he or she would be without medication, extra support from parents, assistive technology or other voluntary interventions undertaken by the student or parents.

The ADA amendments and the subsequent changes to Section 504 broaden coverage under both laws to ensure that more individuals with disabilities are protected from discrimination in secondary and post-secondary education as well as in the workplace.

Tips for Overcoming Holiday Stress

For many parents of children with disabilities, the approaching holiday season is greeted with a mixture of anticipation and dread. The family and social events that fill our holiday season with joy also bring with them a fair amount of stress. One of the first steps that parents can take towards alleviating some of the stress associated with the holidays is to identify possible triggers for their child. The following is a list of some commonly found triggers for children with disabilities:
1.     Sensory Overload:  The lights, sounds and smells that we so fondly associate with the holidays can be overwhelming for some children with disabilities. If you know that your child is sensitive to certain visual or auditory stimuli, take that into account as you decorate and prepare for the holiday season. If changes in your child's environment bring stress to your child, consider decorating your house over a longer period of time so that your child has time to adjust to the changes.
2.     Disrupted Routines: The traveling and constant flurry of activities during the holidays often leads to changes in the family's daily routine. Many children with disabilities need predictability and routine, and these changes can be very stressful. As the holidays approach, plan out your activities and decide which events you will attend and which you will pass up on in order to maintain some sense of routine. This may mean leaving a party earlier than usual in order to get your child home to bed on time, but the decrease in stress that this brings to the family may be worth the sacrifice. 
3.     Shorter Days: Fall and winter months in the Northeast are frequently a trigger for children that are at risk for depression. If you notice that your child is sleeping more or less than usual or is more withdrawn or irritable than usual, consult a physician.  Children who suffer from bipolar disorder are especially prone to episodes of depression and/or mania in the winter months.
4.     Missed Medication:  When our schedules become busy, we are more likely to miss medication dosages, which can have a devastating effect on your child and family during the holiday season. Consider purchasing a watch with a daily alarm that will remind you that your child's medication is due.
5.     Social Expectations: For the child that struggles with social issues, the constant barrages of guests and social gatherings can be very stressful. Other people may not understand your child's disability and may have unreasonable expectations of your child, which may make your child feel uncomfortable.  Consider hiring a sitter so that your child can stay home while you attend social gatherings, and limit the number of guests that you invite into your home.
While it may be difficult to avoid stress completely over the holidays, some of the choices that you make can significantly decrease your stress level. One of the simplest but most effective changes that you can make is to lower your expectations. Don't worry about trying to keep up with everything your friends and neighbors are doing. Take time to relax and enjoy your family.
graduate cap
Diploma Options for Differently-Abled Students in New York: Current Options & Future Directions

Students with disabilities often face barriers in their effort to obtain a meaningful and useful diploma. In New York, the diplomas offered by public schools and required by colleges and employers are based on the student's grade on an objective, standardized test.  However, learning disabilities, focus and attention difficulties, anxiety, and other manifestations of many disabilities can seriously compromise a student's ability to succeed on standardized exams. 
Overview of Options Available
The requirements for the following diplomas have changed somewhat over the past decade.  The following is a description of options and requirements for a student entering 9th grade in 2009.
The Regents Diploma:  A standard Regent's  diploma is available to any student who achieves a score of 65 or more on the five required Regent's exams (Math A, Science, English Language Arts, and two Social Studies). Note that the student must score 65 or more on all five exams to qualify for a Regent's diploma.  This can pose a significant obstacle to many students with learning disabilities.  For example, a student with a math learning disability may easily pass all exams except the required math Regents, yet failure to pass that one test will prevent that student from receiving a Regent's diploma.
The Local Diploma:   A Local Diploma is available only to students with disabilities and can be achieved in two ways.  The first is if the student scores between 55 and 64 on at least three of the required Regent's exams and 65 or more on the remaining two.  Following our example above, if the student with a math disability received a score of 59 on the math Regent's exam, he would qualify for a local diploma.
The second way to obtain a local diploma is for the student to receive a passing grade on the Regents Competency Test (RCT) in any subject in which the student did not earn at least a 55.  RCTs are somewhat simplified tests that are designed to assess basic knowledge in a particular subject.  The RCT "safety net" is available to  students with disabilities until they graduate or until the end of the school year in which they turn 21.   To continue with our example, if the student with the math disability scored less than a 55 on the Math A Regents exam, he could take the RCT in math.  As long as he passed that exam, he would be eligible for the local diploma.
The IEP Diploma: To achieve an IEP diploma, the student must successfully complete the goals of the most recent IEP and have been in school for a total of at least 12 years. If the student does not successfully achieve the IEP goals, he or she nevertheless may obtain an IEP diploma in the year that he or she turns 21.
Significantly, most colleges, technical schools, and the military, as well as many employers, will not accept an IEP diploma as evidence of successful graduation from high school.  This may come as a devastating surprise to students and parents who may have believed that the IEP "Diploma" was a credential similar to other diplomas. 
In addition to the limited post-secondary opportunities associated with the IEP diploma, the State Education Department has recently recognized other criticisms including that the IEP diploma:
·Leads to lower expectations for that student
·May limit the types of classes considered appropriate for the student
·May identify the student as a person with a disability thus violating his or her privacy
·Is being used more than twice as frequently as was originally intended
Future Directions
Recent focus by the State Education Department, parents, advocates and stakeholders are a hopeful signal of improved options in the future.  Many of the comments received by SED on this issue propose an alternate diploma that relies on multiple indicators of skill and competency rather that the single, test-performance criteria.  According to a recent comment reported in the Legislative Gazette by Johnathan Burman, spokesperson for the Board of Regents,  "[t]he Board of Regents, which sets education policy here in New York is deeply engaged in discussing possible changes to graduation requirements/diplomas issued, including diplomas."  
In the meantime, when considering the appropriate diploma option for a student with a disability, parents and advocates should consider the following questions for discussion by the Committee on Special Education:
·What are the student's post-secondary goals (e.g., college, vocational program, employment, supported employment, etc)?
·What skills and diploma will the student need to pursue those goals?
·Does the IEP provide the services and support the student needs to master those skills and secure the needed diploma?
·Does the transition section of the IEP support the student's post-secondary goals?
·Are there any restrictions or limitations associated with the diploma the student is on track to receive?
·Is the student receiving all necessary test-taking accommodations for which he or she is eligible?
Look for updates on this topic in the coming months . . .
In This Issue
Holiday Letter for Friends & Family
Annual Review Time: What to Expect
ADA Amendments
Tips for Overcoming Holiday Stress
Diploma Options
2010 Winter
Training Series

snowflakesThe PNCR will be offering a series of free trainings in the months of January, February and March. The training series was designed to prepare parents for their upcoming Annual Review CSE meetings. 
Click here for detailed information about the training series.
Quick Links

Additional Upcoming Training

February 23, 2010-"Developing IEPs That Work"/ Lexington ARC, Gloversville, NY 11:30am-1:00pm
February 25, 2010- "Special Education Record-Keeping Workshop"/ Clifton Park, NY  9:30am-11:00am and 6:30pm-8:00pm
March 23, 2010- "The Scoop on Special Education Services, Placements, and Accommodations"/ Lexington ARC, Gloversville, NY 11:30am-1:00pm
April 27, 2010- "Tried and True Tips for Building a Productive Relationship with the CSE & What to Do if Things Go Wrong"/ Lexington ARC, Gloversville, NY 11:30am-1:00pm

Visit the PNCR website for detailed descriptions of workshops and locations.

Contact the PNCR
Parent Network of the Capital Region
1190 Troy-Schenectay Rd.
Latham, NY  12110
Ph: 518-640-3320