Basic Guidelines for Choosing an Educational Advocate for Your Child

Basic Guidelines for Choosing an Educational Advocate for Your Child

By Stephanie LeBlanc and Christine Riley, Educational Advocates

Working with your school district to ensure your child is receiving an appropriate education can be challenging. Often parents feel they are not an equal member of their child’s educational team and that decisions are not always made with their child’s unique needs in mind. Add the complexities of Special Education laws, with timelines and procedures that are unfamiliar to most parents and it can quickly become overwhelming for many families. It’s then that parents often look for the assistance of an advocate.

The Role of an Educational Advocate

Not all advocates are the same and the role they take in your case will vary according their training, experience, areas of expertise, and personality. In general, an Advocate may…

  • Answer your questions and simplify the education maze to move toward a better, more appropriate education for your child;
  • Examine test results and school records to determine whether further assessment is necessary;
  • Suggest possible educational and/or clinical areas to investigate based on the unique needs of your child;
  • Provide referrals to proven professionals such as physicians, evaluators, educational consultants, speech therapists, occupational therapists and physical therapists;
  • Prepare documentation to support the program your child needs;
  • Assist in the process from evaluation through eligibility and IEP development;
  • Suggest accommodations to add to your child’s IEP to further support learning;
  • Monitor progress and request program modifications, as needed;
  • Investigate and explore alternative educational placements for your child;
  • Because he or she is familiar with local practices and resources, often see solutions that are not immediately obvious;
  • Support parents through mediation and other dispute resolution avenues;
  • Teach parents how to effectively advocate for their child

Most advocates also consider their role to include fostering a positive and collaborative relationship with schools and school districts to the maximum extent possible, while still holding them accountable to the Federal and State laws that are in place to protect your child. Advocates work hard to maintain a professional, respectful, and collaborative meeting atmosphere that encourages the entire team to stay focused on your child’s educational needs. At times, this is their most challenging – and most important – role.

Selecting the Right Advocate for Your Child

Now that you have decided that you need the assistance of an advocate, how do you choose one? As a parent, you care deeply how your child learns and grows, and about being an equal partner in the team that develops your child’s IEP. A good advocate wants to help you assume a primary role in your child’s education. He or she won’t make your decisions for you; they will help you be informed and assist you in considering options and alternatives. They will empower you.

Although the answers to the questions below will provide important information, it is crucial to feel as though you have connected with your advocate. You have to trust and have confidence in him or her. Often you will get a sense of whether it is a good fit right from the first exchange.

Here are questions you may find helpful, and some information about the kind of answers to look for:

  • What is your education and training?

There is currently no required training for advocates. Massachusetts, along with several other states, has taken part in a pilot study of a nationally-designed curriculum. At some point there is likely to be a more formal standard for those who want to be advocates.

Until then, we are very fortunate in Massachusetts to have the Parent Consultant Training Institutes (PTI), provided by The Federation for Children with Special Needs (FCSN). Through this comprehensive training series many advocates get their first look at the field and begin to develop their skills. The program is unique to Massachusetts; it does not exist in most other states. You can learn more at www.fcsn.org or by calling 1-800-331-0688 to find out about FCSN’s workshops and trainings. The Federation can also help you locate an advocate who has attended their training; when asked, they will supply the names of several people in your area that they feel will match your needs.

It is important to note that most advocates are not attorneys and cannot give legal advice. If a client requires the expertise of an attorney the advocate plays a key role in helping their client to identify a special education attorney. In addition, the advocate will as assist the attorney by preparing a case file as well as bringing him or her up to speed on what has already transpired with the case.

Often Attorneys and Advocates work collaboratively to support your child’s needs.

 

  • What do you do to keep up-to-date?

Many advocates continue to build their skills by attending workshops and seminars. There are frequent changes in the way special education laws are interpreted and implemented, so it’s imperative that advocates stay up-to-date. In this regard, a helpful organization is The Special Needs Advocacy Network, Inc. (SPaN). SPaN, a non-profit professional organization, offers workshops, training and professional information on issues related to special education. SPaN also provides a forum for advocates and interested parents and professionals to share information with each other.

SPaN’s website lists important developments in special education, and contains a professional directory of advocates. For more information, or to download the directory, visit www.spanmass.org.

 

  • How long have you been advocating professionally?

Most advocates will agree that although initial and ongoing training is important, it is by working in the field that you truly “learn the ropes” of advocating. Through experience, advocates find and refine the style that’s most effective for them. Practical experience also helps advocates build their network of resources so they know where to find the help your child needs.

Whatever their level of experience, you should feel the advocate is being honest about it and clear about whether their experience will fit your needs. However, if you are in an urgent situation – a potential expulsion, for example – you will definitely want an advocate who’s well-versed in that specific set of issues. The timelines are very short and the consequences of a mistake are too dire for anything less.

 

  • Have you advocated for children with my child’s disability/ies in the past?

It’s not imperative that an advocate specialize in your child’s disability, but it can be helpful. Most advocates can assist you simply because they know the ins and outs of the special education process. An advocate who has plenty of experience with your child’s disability (or even specializes in it) can offer some useful additions to that general knowledge. He or she often has a strong understanding of the various therapies, treatments, and programs available, and has put together a network of proven professionals: physicians, evaluators, behavioral analysts, therapy providers and educational consultants, many of whom will also have specialized knowledge of your child’s disability.

Even though each child’s pattern of strengths and challenges is unique, children who carry similar diagnoses often share common characteristics. An advocate who understands those characteristics well and has a set of resources ready to address them can simplify the process of tailoring your child’s program.

 

  • Have you advocated in my school district?

It is often helpful, though not essential, for an advocate to have experience in your district. By working in a school district the advocate gets a firsthand look at the programs available in that district. They have experience working with the staff and have an idea of how the district works.

An advocate who has a particularly difficult case going on in your district will sometimes refer you to a different advocate, to avoid the possibility that his or her involvement with the difficult case would bias the district against yours. Because of such situations, it can sometimes be an advantage to have an advocate who is “new” to that district.

If you are considering an advocate who does not have experience in your district, ask him or her how important they think that experience is for your particular situation, and what they would do if they found they needed some information about that district.

 

  • Do you have enough time to handle my case?

Be sure to outline your needs to your advocate. Most advocates handle several cases at a time and try to monitor their workload closely. Through your initial discussion with your advocate, your needs and the approximate number of hours it will take to meet your objectives will become clearer. If your needs go beyond what the advocate can accommodate, you may want to ask him or her to recommend another advocate.

 

  • How much do you charge and what do you charge for?

Be sure to get this information while interviewing prospective advocates. Rates vary, and so do the services that are billed. Most advocates charge an hourly rate, and most charge in some way for travel time. Find out what will be considered billable activities. It is also reasonable to ask for an estimate of the number of hours involved in your case (or at least the initial stage of it).

Some advocates request a deposit or retainer upfront, while others prefer to bill hours as they are worked. Most advocates will discuss their fee structure with you during your first contact. In addition, many advocates will send you a fee agreement outlining their fee structure and any other policies or limitations they want you to be aware of.

 

Advocates’ styles vary just as parents’ styles do. Once you’ve identified some qualified candidates, choose one who is compatible with your personality and objectives. You should feel comfortable speaking with him or her and sharing important information about your child. You are about to embark on journey and your working relationship with your advocate can make that trip a more productive and successful one if you are on the same page.

 

Now that I know how to pick one, where can I find them?

In addition to getting names from the Federation for Children with Special Needs or SPaN, you may also ask for referrals from families who have worked with an advocate in the past. Many pediatricians, evaluators, therapists, and attorneys can provide recommendations as well.

In Closing

Advocates can be important “translators” between families and special education professionals. In the course of your child’s education, you are likely to interact with a large number of different types of specialists. You need to be able to work effectively with them, exchanging ideas and concerns, and communicating about what’s working and what’s not. Often parents find that they are able to communicate more clearly and negotiate more effectively with an advocate by their side.

 

About Stephanie:

Stephanie is a Special Education Advocate who specializes in advocating for children on the autism spectrum. In addition to her private practice, Stephanie is an active member in various professional organizations. Stephanie resides in Hopkinton, MA with her husband and is the mother of 4 children, one of whom has autism.

For more information on Stephanie’s work please visit www.AutismSpectrumAdvocacy.com or contact her at 508/625-2209

About Christine:

Christine is a graduate of Marymount University in Arlington VA. She is a trained advocate and mediator. Christine resides on Cape Cod with her husband and son.

For more information or to contact Christine directly, please visit www.capecodadvoate.com or by phone at 508/428-2288.

Happy New Year 2016

Happy New Year from all of us at Autism Spectrum Advocacy!  We hope that 2016 will be another exciting year of positive change and personal & professional growth.

Special-needs parents everywhere have been sharing their own resolutions for the new year, and there are always suggestions for how to enrich our own lives while meeting the needs of our loved ones.  We (Cheryl, Stephanie and Debi) look forward to continuing the work we love in support of families and their special students with Autism; we also hope to create more time for self-care (eating healthier & exercising more, getting a good night’s sleep as often as we can!), be more present in our daily lives (practicing mindfulness & patience, being truly available to our families with fewer distractions, sharing more coffee & conversation with loved ones face-to-face rather than via text!), participate in even more trainings, workshops & seminars (as listeners AND as speakers) in order to share information with families and our network of Autism-concerned professionals so that we may all benefit from that shared knowledge, and a host of other plans & ideas for the coming year.  We are currently coordinating with several local agencies & organizations in order to share our own presentation “Preschool Transition for Children with Autism Spectrum Disorders” with families who have children turning 3, and we’ll look forward to sharing the dates & locations for these presentations as soon as those are confirmed.

We’d love to hear some of your resolutions for the new year: what are you thinking about doing differently, or better, or smarter? No matter what your own resolutions for the new year may be, we hope the new year will be wonderful for you!

 

Sped Child & Teen: A Great Resource for the Autism Community in Massachusetts!

SPED Child & Teen is a wonderfully informative website established and edited by Sharon Riddle about current & future Autism-related programs, workshops, seminars, support groups, camps and other resources & matters of interest for families in Massachusetts.  The website was inspired by Sharon’s family’s never-ending quest for programs and services to help their own family member with Autism; she wanted to find one place to view upcoming events and opportunities from many of the region’s organizations so she decided to create one for parents.  In addition to detailing programs & events specifically of interest to families with Autism, the site also lists activities that may be of interest to families who are concerned with other disabilities. It’s continually updated; there is a sign-up area to receive newsletters to your email, and there is also a Facebook page sharing the same information.

Some current & upcoming programs & events detailed include:

Jan 9 – Jan 30

Dear Colleague Letter on Free and Appropriate Public Education (FAPE)

On November 16, 2015, the US Department of Education Office of Special Education and Rehabilitative Services (OSERS) issued an important new “Dear Colleague” letter. OSERS provided in this letter a definition of “general education curriculum” under the Individuals with Disabilities Education Act (“IDEA”). IEP goals must be aligned with grade-level content standards for all children with disabilities.

See letter here: http://www2.ed.gov/…/memosd…/guidance-on-fape-11-17-2015.pdf

Home, home in on the range: looking at “average” behavior data

When discussing your child’s progress in the context of a behavior program, you may be told that “on average, your child demonstrates X number of X behaviors per day”. If this average is lower than it has been in the past, that’s great news: the behavior program is effective!  Or is it? It’s important to know that sometimes, an average may not provide us with the information we need to determine whether a trend of consistent progress has been made since baseline data collection.

When data is recorded over a period of time, it’s often summarized as an “average”, or a “mean”, which is a well-known measure of central tendency. Mean can be used with both discrete and continuous data, although its use is most often with continuous data. The mean is equal to the sum of all the values in the data set divided by the number of values in the data set. The mean is essentially a model of your data set: it represents the value that is most common. For instance, if a student exhibited aggression to others over a 5 day period, it might look like this if the frequency was recorded and then averaged:

4
3
4
3
4

Such a daily frequency count produces a mean of 3.6, which is the AVERAGE number of aggressions per day. Such a mean makes sense, because it is representative of the individual values that have been averaged.

The mean, though, has one BIG disadvantage as a measure of central tendency: it is particularly susceptible to the influence of outliers. (outliers are values that are unusual compared to the rest of the data set by being especially small or large in numerical value). This is problematic when summarizing data that may be highly variable. For instance, consider this data collected on the number of daily aggressions measured over a period of 10 days:

0
0
12
14
13
12
40
60
60
0

This daily frequency count results in a mean of 21.1, which tells you very little about the actual frequency counts measured. Calculating the median (the middle score for a set of data that has been arranged in order of magnitude) might be a better measure of central tendency in this situation, as the median is less affected by outliers and skewed data.

In order to calculate the median, we first need to rearrange that data into order of magnitude (smallest first). When working with an odd number of data points, the median is the middle mark because there are an equal number of scores before it and after it; in the case of an even set (such as ours) you simply take the middle two scores and average the result. So, if we look at the example below with the same set of data:

0
0
0
12
12


13
14
40
60
60

This shows the median frequency of daily aggressions is 12.5, which provides a bit more information about the actual counts that occur on a daily basis. You’ll note, though, that even the median does not represent the outliers of 0, 40 and 60 adequately.

Bottom line? When talking about data that includes significant variability, it makes sense to know that an “average” number might not tell the whole story, nor might ANY measure of central tendency. Request copies of the actual data sheets upon which the data is collected, so that you can see the raw data before it is “averaged”. It’s important also to see the data points graphed, so that you can understand what, if any, trend exists (is the behavior increasing? Decreasing? Remaining stable? Demonstrating currently-unexplained variability?) In the case of variable data, make sure you know the full range of the data for the measurement period  (including outliers); in the case of an unclear trend in graphs, consider requesting that more specific & detailed Antecedent-Behavior-Consequence (“ABC”) data be collected so that everyone working with your child better understands the antecedents that occasion the behavior and the consequences (sometimes “unintended” consequences) that may be maintaining them: data with a lot of variability often indicates that we don’t yet understand (and are therefore not controlling) the circumstances that set up the behavior and/or the consequences that may be reinforcing it. A closer examination of variability and range in behavior data should lead to improved data collection & better understanding, which is more likely to result in more effective behavior programs and real progress.

Light It Up Blue on April 2

April 2, 2015 5:30 – 8:30 p.m.
University of Massachusetts Medical School
Sherman Center Multipurpose Room (first floor)
55 Lake Avenue North, Worcester, MA 01655

light-it-up-blue-2014

University of Massachusetts Department of Psychiatry’s Division of Child Psychiatry is again observing International Autism Awareness Day on April 2 with a musical celebration of autism awareness and acceptance at UMass Medical School’s Worcester campus.

Parents, children, friends, community members and professionals will come together with music, dancing, light refreshments and entertainment. The event will also feature a providers fair, to share information from area professionals providing a variety of Autism-related services. Advocates from Autism Spectrum Advocacy will participate in the provider fair: please stop by & say hello!  There is no cost to attend this fun, family-friendly and informative event!

The evening will conclude with a ceremony in which the front of the Sherman Center will be illuminated with blue lights as part of the international Autism Speaks “Light it Up Blue” observation.

 

 

21st Annual Family Fun Fair, March 21 2015 in Milford

Advocates from Autism Spectrum Advocacy will participate in the 21st Annual Family Fun Fair taking place on Saturday, March 21, 2015 (snow date: March 28th) from 11am to 2pm at Milford, MA High School.  Please stop by and speak with us at our table!

The annual Family Fun Fair is co-sponsored by the Massachusetts Department of Developmental Services, Kennedy-Donovan Family Support Center and the Milford Family & Community Network. Enrichment information on health, educational, and safety issues is provided by various local agencies and programs. A wide range of exhibitors, who work with families from the prenatal stage through adolescence, will include: health care professionals, social services, community and educational programs, day care providers, and small businesses. There will be entertainment throughout the day, including free activities and demonstrations for the whole family.

Upcoming FREE IEP Clinics

Do you have concerns with your child’s IEP? Speak with an ASA advocate, free of charge. We will be offering a series of pro-bono 1-hour IEP consults on Monday, March 23 to parents working with The Autism Resource Center of Central Massachusetts which will be held at their Franklin, MA location from 9:30-12:30.  Currently, 6 appointments are available. There is no cost; however, pre-registration is required.
If your child is DDS or Autism Division eligible and would like to sign up for one of these clinics, please call Kathy O’Neill, Autism Information Specialist at Autism Resource Center of Central Massachusetts, 508-298-1609.

An Act to Provide Equal Access to Evaluations for Children with Disabilities

“An Act to Provide Equal Access to Evaluations for Children with Disabilities” is a bill that establishes more reasonable rates for independent educational evaluations (IEEs), which are often needed (but nearly impossible to obtain) in order to ensure appropriate special education services for children with disabilities. The current rates set by the Massachusetts for independent evaluations are so far below the rates customarily charged by evaluators that many low-income and middle-income parents  (who often simply cannot afford to fund an evaluation at their own expense) are unable to obtain an information necessary to effectively participate in the development of appropriate special education services for their child. Given that so few evaluators DO accept the current rates, the extreme wait times to access such an evaluator often amounts to a lot of valuable education time wasted time for children with disabilities.

Key Facts

  • This bill establishes reasonable rates for independent educational evaluations, which are critically important to ensure appropriate special education services for children with disabilities. Rates would have to be reviewed every three years and adjusted as necessary.
  • Educators and parents rely on educational evaluations to determine the special education services necessary for the child’s individualized education program (IEP). State and federal special education laws give parents the right to fully participate, as equal members of the IEP Team, in the development of their child’s IEP. Independent educational evaluations provide the only way for parents to exercise those rights and participate effectively in this process in the unusual situation where they disagree with a school district evaluation.
  • State and federal special education laws give parents the right to request an independent education evaluation, paid by the school district, if they disagree with the school district’s evaluation, but currently, the rates set by the state for independent evaluations are far below the rates customarily charged by evaluators. This means that many low-income and middle-income parents cannot obtain the evaluation necessary to effectively participate on the IEP Team.
  • For example, the state rate for a neuropsychological evaluation is set at an hourly rate that is 28% lower than Medicare and 38% lower than BlueCross/Blue Shield. The state maximum rate is $900, while $2,500 or more is the rate charged by private evaluators. Neuropsychological evaluations are often the most important evaluation in determining a student’s educational needs and paramount to developing an appropriate IEP.
  • The bill would require that rates be established at a level that allows parents to have a choice of qualified evaluators, as required by the United States Department of Education. [1] The bill also requires that rates include observation of the student and other critical aspects of a valid assessment.
  • In addition, the Bureau of Special Education Appeals would be able to order a higher rate in extraordinary cases. Further, In the rare instances that parents prevail at a hearing and have paid expert fees, the parents would have the right to be reimbursed for these fees by the school district.
  • This bill helps to level the playing field for low-income and middle-income families, with modest costs: increased rate costs are estimated at approximately $500,000-$750,000 statewide.

These rates are in NEED of adjustment: the current rates are so unrealistically low that very, very few practitioners of any kind will/can afford afford to accept them…this leaves families at a severe disadvantage when the school’s evaluations are less than comprehensive or appropriate and families are unable to fund an appropriate evaluation on their own.

rates

 

NOW is the time to e-mail or call your state senator and state representative to ask them to co-sponsor important legislation regarding Independent Educational Evaluation rates.  The deadline for legislators to sign on as co-sponsors is January 30 (NEXT WEEK!) Please call or write to express your support. Find information identifying your State Representative and Senator via the site at http://www.wheredoivotema.com/bal/MyElectionInfo.aspx

For more information about IEEs, read attorney Michelle Moor’s April 2013 blog post “What is an Independent Educational Evaluation – and Who Pays for It?”  http://michellemoor.com/what-is-an-independent-educational-evaluation-and-who-pays-for-it/

 

Need Help?

 

 

spedspeak

Overwhelmed by “SPED-speak” at Team meetings?  Feeling outnumbered?  Confused by your child’s IEP & worried that it may not address all areas of needs? Concerned that you might not “know enough” to be able to effectively help your child?  We can help!

ASA advocates are accepting new clients for Spring 2015: call us to discuss your concerns today.

  • An advocate is someone who helps a parent or family to understand the special education process.
  • Advocates can provide information about special education options and requirements, and can help you to seek a specific service or program for your child.
  • An advocate can help you carefully read your child’s school records, testing information, and Individualized Education Program (IEP).
  • An advocate can attend Team meetings with you.
  • A skillful advocate who knows local schools and resources can often see solutions not immediately obvious to other people.
  • An advocate, most importantly, can help you to become a better advocate for your own child!!

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