Category Archives: Uncategorized

What is a FAPE? An interesting perspective…

An interesting comment from a special education attorney I work with often (and, sshhh, kind of like- we often come to compromises) who represents school districts: They asked does the student require something (in this case, a young girl with autism unable to report her day accurately whose parents were not being given equal information, and were therefore unable to be equal team members) and “does the team feel that student requires requires such communication to parent (appropriate, same day) communication in order to receive a FAPE?”. They (attorney and district X) argued no.

My take is “of course”. As a mom and professional, I need to know what happened at school to best support my student at home. Autism doesn’t end at school.

One of the 6 legal components of a Free and Appropriate Public Education (FAPE) is Parent Participation.

“IDEA guarantees to parents the following access to information:

Access to their child’s educational records;

Parent participation in all IEP team meetings regarding identification, placement, and educational decisions;

Prior written notice (Anytime anything will be changed in a student’s IEP, their parents must be notified first.);

Procedural safeguards written notice;

Understandable language (Translators must be provided when needed.);

Informed consent (Before any evaluations or services are provided, the student’s parents must be informed and agree in writing before the school can move forward.); and

Right to request independent educational evaluations at public expense”

If a parent is not (reasonably) equally informed, their child is not receiving a FAPE in my lay advocate perspective. This is INTEGRALLY important to students who, because of their disability, can not report their day. (I know this as a parent and professional, on all sides of the table). I want the parents I work with talking to teacher/those who work every day with their children and if an issue is not resolved, then to me. Otherwise, how do moms and dads come to the team meeting table as *equal* participants?

What are your thoughts?

(The above is not written as “legal advice”, as I am not an attorney. It does seem to be “common sense”).

2020: Looking for an Educational Consultant/Advocate


Always be honest with your advocate, or one you are seeking to hire. In my work, I give phone/email references because social media is simply a forum to be manipulated- parents need to call other parents directly. Hiring an advocate is a huge choice. One of my biggest joys is having 90%+ of families whose kids are still receiving services reach out annually for my attendance at annual reviews.

99% of parents who contact me do so being honest. If you sent a mean email to your school, no judgement here, it’s not the end of the world because the work I do is about CHILDREN w disabilities. If you wrote a blog or had a podcast about how BAD and EVIL (never my words!) your district is, tell the advocate you want to hire. Don’t play surprised – or victim- when those (even rightfully indignant) blogs are read by your district.

Don’t then pretend your advocate, who has done excellent work for your children, is an enemy because they reality-checked you. Be a member of the team. No one in this “business”, school or parent side, should be actively attacking one another in writing. Social media lives FOREVER.

This work is about kids. Helping kids, mostly with autism, many with Ds and emotional disabilities, for me. It’s about resource and referral to help give parents’ options.

It is time for all of us (myself as a mom included) to own our responsibilities to our kids by specifically blaming those who did or didn’t do something we thought should be done 3 or 5 years ago. We ALL need to use independent educational evaluations and observations to support what our kids need.

In this new year, hire an advocate you have reference checked- and let it sink it that a GOOD advocate will be honest with strategic options. They may even ask him extra options for stress relief which you can choose to accept or not. Don’t obsess if someone doesn’t agree- you can probably find a “talking head” if you look hard enough. No one who does this work, me or anyone I know, wants anything but to extricate themselves from situations where parents go in a very different direction (and I understand that). No one is going to drive 50 miles or 200 to attack you in your shower. “. That is literally mentally something you need to get help for. NAMI.

What I will never understand is placing titles and immature names on kind and smart professionals who helped you and most importantly your kids. That is drama one makes up internally. Instead: “breathe”. Exhale.

Advocacy isn’t a perfect job. Parents and kids aren’t perfect. We are ALL in this together.

I am so blessed to work YEAR after year, some 10 years+, with amazing clients and some really exceptional school TEAMs.

Here’s to an amazing 2020, helping kids!

Collaboration: Let’s make it happen

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Collaboration: It’s not a strange word!

First, happy summer!

My good friend Tim Ruggere, a current educational advocate/consultant and former  public school administrator (including principal of what was then the largest middle school in the Commonwealth0) in quite a few districts.  He and I have always worked collaboratively; he reached out a few weeks ago to tell me he was starting an advocacy  practice. He has met with many and we met. We have communicated extensively about some systemic pros & cons of working together as teams.  We brain-stormed ideas.

What wonderful relationships can be nurtured, ideas shared, and trust built that will, in the end, help CHILDREN w disabilities, & to help them grow into young adults w disabilities (ie: DDS, MDHE, DMH, MRC). By looking at all team members’ perspectives & building trust, we support students & families, they trust us, and we see best/better outcomes.

Together, we are co-launching a new & unique venture that does not currently exist in an independent way. We seek to create a community and networking opportunity: connecting advocates, educators in multiple settings, combinations of both, retired or career change educators and administrators who have become advocates, independent evaluators, etc. w the goal of supporting all in figuring out how to best serve children, & kids as they grow into adults. No money talk, no mandates from the out of touch district folks who barely visit schools, forgetting to meet or observe children they refuse to appropriately service for the wrong reasons. We seek good, meaningful discussion & collaboration in a positive & congenial manner. No *only* SPAN, no *only* MA Administrators of Special Education Administrators, no *only* FCSN. The idea is one Tim & I see as lacking everywhere.

I have trained on this as part of a team & alone to parents and professionals alike. Tim has done amazing work in some very challenging districts in MA/NH.  As with most team members, I find his heart was already in the right place, the professional choices he was allowed to make in certain places controlled by others. and I applaud his change of focus.  That systemic expertise is so valuable. We share the opinion, as many of you do, I’d suspect, to “presume competence”.

Let’s stop this too often used language of “two sides of the table” & work together.  Get together for dinner, great conversation, and introductions- let’s start a network of humans who care about students and how we can most appropriately serve them and all get along. Administrators & SC members, former admins, advocates/attorneys, and independent evaluators welcomed. Tim and I are thinking early August.

We envision a group committed to collaboration, through relationship building.

If interested, please send me a message. If you know Tim, he is a kind, smart & dedicated professional & his wife and business partner, Debbie, is lovely.

Here is to sitting together around tables, not on opposite sides of them.

 

Friendship, Autism

One of the best parts of my job is being able to connect my students, especially when they have autism and connections are SO incredibly important. These two awesome youngsters, both long time clients, live in the same neighboring district. We were able to negotiate the same summer program for them. Not only do they get to access an appropriate, high-quality ABA program, they now have a new friend in their own community to ride the van with all summer. *Posted with explicit permission of both families*

Why I *love* my job

61001652_10157650366189341_4755825460183564288_nSome days and weeks I absolutely LOVE ❤️ my job. There have been lots of those occasions this week. I want to share WHY this work means so much to me.

This amazing little boy happens to have autism. He is learning to communicate effectively.  In the years I have known him, I have been privileged to be part of his team, working with some great folks, conduct observations, attend meetings, do home visits, and get to know his awesome parents and home BCBAs. They are his BEST advocates, but it takes a village.

Some students need a more restrictive setting to access learning and make effective progress. So happy for him, and his mom and dad, that he will be starting at an amazing ABA private special education day school in a few short weeks

  • . *He will fly higher- and have the clinical supports onsite his unique needs require.*

Know if you are not in this place (the one where you worked with the team and “got to yes”) and maybe feeling discouraged… the process can and does work when many things happen, including looking at the process of getting any needed support as a marathon, not a sprint, working with the school and your chosen home team, and never stop believing in your kid (and data!). 💕💕💕💙💙💙

I am a very proud Consultant/Advocate, but after years, also someone who cares very much about his success.

 

*(express permission given by Parent/guardian to share photograph and general, non-identifying information)

How broken is special education: The unique view of a parent, educator, and advocate

C9D438AD-3920-496B-9B53-9C3957993445Recently, I’ve had to do more thinking about special education as a broken system and how easily IT (and sometimes kids and good people working in it) are used as scapegoats by too many.  There was an opinion piece in the Globe that I commented on (basically I had so much to say it turned into 2 comments).  Those comments are now here and they illustrate my take on what is indeed a system of imperfection- with some big things to fix but also some “easy” fixes.  (Hint: It involves a running theme of my work and this page which is “presume competence”).

This post, and my work, in no way shape should be taken as a “one size fits all” criticism or dissection of the work I do.  I work with many great public school staff members.  Even they sometimes get relegated to not doing or saying what they want to *if* their boss or their boss’s boss says not to.  The teachers and team members I respect the most are the ones who not only speak up at a meeting, but I equally admire the folks who reach out privately to parents and are honest about what they think might help the child.  I have the highest level of respect for the administrators and team chairs who, at the parent’s request, work together with me on behalf of the child.  This work is about relationships as much as it’s about the child.  That’s how we often get to “yes”- behind the scenes frank discussions, sitting with one another during observations, and trusting that we both have unique roles but we are both dedicated to ensuring a child is learning.

The biggest problem in special education is that, despite it not being funded as promised by the federal government via the IDEA, many school districts fail to provide high quality programs for children with identified disabilities. This far too often creates a path where the kids are not learning and accessing the curriculum (special ed is about providing equal, not more) and not making progress to the point the process becomes a battle for parents, many who drain their savings to get help from outside professionals and evaluators, attorneys, and advocates.  I have 13 years and counting, 8 full time, as an advocate and consultant.  Relationships are broken with school districts who may or may not be following an IEP, and the IEP may or may not be reasonably calculated to meet the child’s needs which leads to students falling so far behind they require highly specialized programming which costs a whole lot more but is what is legally required (burden on the parents to prove) to have a child simply learn.  It shouldn’t be this hard.

While there are some students, one of my kids included, whose needs can not be met in a public school setting simply because of the severity of their disability, special education costs are the first to be blamed for, well, everything come budget time or staffing needs or day to day issues every school faces.

I would be the happiest mom if my child with autism did not need to go on a van an hour each way to a school far from our community at a cost which would pay for a bachelor’s degree and probably a masters at a state college for just one year. He needs his school and all his teachers/support staff, for without them he would not be accessing any learning and gaining skills he needs as an adult to work, live, and hopefully thrive in a community setting with support. If that program were in my district and everyone’s, I’d joyfully be an under-employed advocate for cases where I work on behalf of parents with the district to get kids to the right out of district schools with the highly qualified staff and resources many/most public schools don’t have.  I often remind folks when there is tension that no one asks for their kid to have a disability.  In addition, 95% of parents I work with are absolutely on target with understanding their child’s needs.

There are many amazing special educators, PARAPROFESSIONALS, therapists, and yes some administrators who put children first. The challenge is that while most direct service providers chose this job for a reason, the right one which is to help kids, people above them and those higher up who make $ decisions often get in the way. If districts would work WITH families and not against them, you would see special ed working better, in addition to having funding be given no matter what the government sends or doesn’t.

In a world without money trees, there are not enough of the last group of people- administrators, school committees, city councils, etc. who understand that spending taxpayer $$$ litigating with families is wasted $, hurts children, implodes relationships with families, and makes the act of a child going to school a war. No one starts off angry. Often, as parents, you are emotional.  If and when your kiddo is not accessing learning or services are not what is appropriate, you end up frustrated, and that gets taken out sometimes on staff who are good, staff who are not, and in the end, kids see and feel the tension from both sides.

The things I do most often to help kids in IEP or 504 meetings are “common sense”, things no parent should need to pay an advocate for, but the system and regulations are complex and ever changing and my own family, 18 years ago-ish, hired an advocate when my oldest was 3.  Having done training for parents and districts on rights and how to work as a team, direct service, consultation, observations of schools and programs in dozens of districts, and this time of year living in team meetings, the best thing we can do is to presume competence of the child, and the adults of one another, so we can work effectively to help kids, and to not burn out good teachers and team members.

Special education is reactive, NOT proactive. It’s a system almost set up to fail. I always say to families I work with, “it’s my job to work myself out of a job, to give you the skills you need to most effectively advocate for your kiddo successfully without needing to spend money on people like me” . 25-35% of my clients are pro-bono or reduced rate simply because ethically I believe every child deserves an education and I also partner w great agencies and people who make referrals and I can’t say “no”), but I’m actually the “cheap” component.  Parents are forced to pay experts like BCBAs, BCBA-Ds, and neuropsychologists (I’ve seen costs for hiring a good neuropsychologist including testing, an observation, and and attending a team meeting run from $3000-$10000) to even get evaluations when the school says “no”. In return, the school is merely forced to “consider” the testing and recommendations, not required to agree with them.

This is indeed a broken system where people literally sit on different sides of the table from the beginning.  In many places, parents are not even part of the initial process, the school team has often “pre-teamed” (decided what they will offer before the meeting making the meeting a farce because the parents).  Parents are then invited in to their child’s meeting with the school team already seated; it can be pretty intimidating.

Treating parents as equals and not visitors would help the process, literally from the bottom up.  Teachers being able to say how they *really* feel without fear of retribution (ie: getting fired) and parents being able to say how they really feel without fear of retribution (ie: they will upset someone who will then take a comment personally and take out that frustration on the child- which I know happens hopefully rarely, but am confident not with the vast majority of true professionals).  Being kind to one another, being truly respectful, and being open and honest about what to do to meet needs, even when they don’t fit into “the box”, are some good ground rules.

You have to start somewhere, right?

How do we know if we have failed a student?

Here’s normal- for us. Writing as a mom, not a professional.

 

Today, the Boy stimmed so much and pinched himself so much and banged his head with his hands out of sheer frustration, he physically hurt and I cried. Then I gave him his PRN.

This is the stuff NO ONE wants to read, not because they think it’s a lie, but because they have no words or actions to make A or his family have any comfort. We read so many inclusion (that word can mean things) success stories, we can’t acknowledge as a special needs community sometimes we, the system, fail.

This is what breaks my heart about A: He KNOWS he has no friends. His last one, way more impaired than him, dropped him. Defriending for no explanation at all 😢

He sees everything- every relationship- his friends-  in black and white.

He’s trying to have a *small* bday party with actual peers (and a few specially chosen adult friends) but this is how he feels in his heart. I don’t blame most of the kids- they don’t know they hurt him bc of their disabilities- but I do question their parents’ roles. Anyone who has met A, teachers etc, will tell you how kind he is.

***Why as a society do we allow kids with autism to feel this way? They are treated as second class citizens too often.***

Does this not make you sad? Maybe it’s a mama thing. ***Maybe the best we can do is teach our kids with autism how to get along with adults.***

He will have a birthday party with a few, or no, friends. These are HIS words below, not mine.

He can’t go to church without be ostracized. He CAN go to the pool, Echo, or Yogibo. Thank goodness. He doesn’t have enough hours with his PCA and respite worker because of the worker’s schedule now, so I do the best I can. We have used a family friend to cover weeks of hours, as needed.

But this is a SAD reflection on how we as teams and professionals (DDS, schools, districts, churches, HUMANS) see kids feel. We don’t, or rarely can’t, do anything. The older the person with a disability gets, the less people are responsive.

Another birthday, after being physically mistreated or maybe sexually abused at his old school, we simply don’t know, *after sitting at home for two months* to go to a school it took 90 minutes the last two Fridays for him to get home from…. shouldn’t he have the ability to have a birthday celebration with his peers and shouldn’t we have the ability to *invite* people?

Instead, I will be sending him things in the mail and pretending they are from people who care about him and I will be forging cards.

Let’s be honest. Have you met my son? The labels (ASD, ID) don’t do him justice. He is kind and friendly. He loves weather and teddy bears. He is affectionate.

He is not a bad young man, he has never in his life had a discipline problem. He has been failed by so many people, but now I am beginning to wonder if I am one of them, as well. Did I not do the right things or enough things?

Special ed. Too many politics, too much drama, not enough caring about students and people.

Thanks for walking in our shoes for a few minutes.