Category Archives: Uncategorized

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.

 

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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.

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 many 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 😢

His school (I’m hoping mistakenly) forgot to send me the emails of parents who said they would release their emails (love the non-rights and inequality of students with disabilities and those without- no student handbooks even with parental permission, this is a first in his ed career) but this is how he sees 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 because they are treated as second class citizens?***

No speech by an SLP. I can only advocate so much. Some kids and their parents and some schools simply are not good and we will make the best out of a non-ideal situation.

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. The school prior (EVERY school prior) at least had a parent directory- this one refuses/doesn’t.

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.

Placement process reality

Your team agreed your child needs an outplacement.  Perhaps your child’s needs can not be met in her current placement?  Private day schools and collaboratives can unfortunately terminate a student for no reason with 30 days notice.  They can also initiate an “emergency termination”.
Now what happens?  An outplacement is usually a blessing, but it is work to get in place, unless your school district has already worked with one school and they have agreed that school is appropriate (and you have, too).
Districts send referral packets to private day schools and collaboratives they think might be appropriate based on the student’s needs.   Parents and collaterals often participate in that process of determining potentially appropriate schools.
What is in that packet? Anything agreed can be sent.  Typically, the IEP, progress reports and the last school evaluations as well as independent evaluations submitted to the school are sent so receiving schools get a sense of a student’s needs.  Behavior plans and incident reports could be sent.  Parents sign off on that release. Whether the separating is amicable or not, the outgoing school will usually not involve itself in the school search process, except to with consent speak to the potential school to ensure a smooth transition and before that to ensure the potential receiving school have up to date information and proper historical background.
A private school/collaborative who receives a referral packet then decides if it might be a fit.  If so, it invites parents in for tour, sometimes with kids, and sometimes kids do visit after.  The purpose is to then give the school information to bring to their admissions board/team to see if there will be acceptance offered, or not.  That is usually done 1x per week.  Advocates work closely with private day schools and collaboratives, as well as with your district, to ensure the process moves as expeditiously as possible.
Private day schools and collaboratives then say “yes” or “no”.  They are under no obligation to accept any student, the obligation (arguably) is on the district to agree to fund any of the schools they send packets to who accept the student.  The schools do not have to give reasons.  They don’t even have to send letters saying “yes” or “no” to the parents.  It’s like the college admissions process, without the benefit of a denial being written and sent often (ie: “At this time, we do not feel Joey is appropriate for our program”.
Whatever school parents choose, they should feel free to always consult a special education attorney and address issues with their school and home teams.  Always have a “Plan B”.  Educational consultants do an extraordinary amount of work talking to collaterals to give them information or work with them to describe the barriers and problem solve, if needed.  You can not FORCE a school which has said “no” to say “yes”.  It makes families appear very negative/pushy to the private day school.  These schools have many candidates for limited slots and they are trying to choose who they feel is the most appropriate fit at this time.  It is not like a public school where the service delivery grid travels with the student automatically.  Often, private day schools who initially deny admission suggest a student re-apply the following year or two if they feel the fit is not right currently.

Spring is almost here… are birds chirping? Or IEP meetings happening?

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It’s IEP Season. This is the time of year (my 12th IEP Season) parents who are in a dispute with their IEP team may consider hiring an advocate.   It’s, in fact, one of the best times to do so, as an advocate will help you build your case and obtain the evidence you need to effect change.  You do need to not expect someone be immediately available.  I say this with great respect to my colleagues if someone has an open caseload in March, that is likely *not* a good thing.  I’m fortunate my work load is by referral only at this point in my career.  I get referrals from wonderful families (you can see some on Linked In), but also professionals and also special ed administrators.  Am I strong? Yes.  Am I kind and do I smile? Yes.  Do I advocate with passion for my client?  Absolutely.

If you have educational advocate, you may think about making a change… Keep in mind the following as you decide if you are going to continue your relationship with your child’s educational advocate. First and foremost, advocates aren’t lawyers. We also aren’t licensed (I think we should be).  Every advocate operates their practice differently.  We have strengths (one of mine is negotiation and simple BSEA work and mediation) and challenges (one of mine is tolerance for kids being hurt in educational programming).

Make sure any potential advocate’s billing practices are transparent. For example, it’s apparently common practice for advocates to maintain consultative relationships with other professionals with the advocate billing the client for the time the professional bills the advocate. At minimum, ensure a potential advocate’s contract indicates how that consulting professional’s time will be billed and at what point authorization for funds would be required.  Make sure a new contract is signed every year- things change.  For example, I added an online billing option (which people love), but it costs me 2.9% to process a payment, so I added to my contract there is a 2.9% charge for paying online.

In my practice (as I believe to be best practice) I suggest that parents enter into professional relationships/contracts with whom they choose and billing should be separate.  Don’t blur lines- do a “gut check” if an advocate wants to talk to an attorney and you don’t. If an advocate is in over their head, I’d argue it is their responsibility to tell you as much.  If you want to hire a new advocate, tell us, we understand not every advocate is best for every family.  If you choose to hire an attorney to work alongside your advocate, make sure they mesh well with your advocate and home team.  I trust special ed attorneys who value relationships I’m wary of ones who come in and disregard the input of for example a 4-6 member home professional team (ie: neuropsychologists, developmental pediatrician, long-term advocate YOU trust and have told as much).  I’m downright confused when they, and maybe this is part of their job, don’t have the vested interest in a child I do.  (See picture at top of post, it’s a “meme” I wrote).

Bottom line: Check references, make sure any advocate is experienced and knows the laws and regulations, can take notes, advocate strongly verbally, and keep professional during team meetings.  It’s a balancing act.  Trust her and keep communication lines open. We don’t read minds. Make sure you are comfortable with her strategy. (Make doubly sure they she has a strategy you agree with!) Without trust, there is no relationship which benefits your child.  I go to the doctor and have lots of questions that I ask, but I trust their opinions, too, and balance my decisions.  Micro-managing is not something which works.  When people say “we love you and your work but we don’t want collateral releases and you can’t talk to the school or our home provider, it can make for one heck of an awkward IEP meeting”. It’s understandable, but shows a lack of trust.  Every lawyer and advocate I have hired, I have trusted.  Teamwork is the key.  Don’t take advantage of advocates who are kind and offer to help pro bono but whose help is sometimes abused.  We know what agencies to refer people to if needed.

Another thing to remember: A good advocate does not typically work in their own school district if their children are still in the special education system.  While there are occasional exceptions to that rule (ie: the advocate’s kids are safely ensconced in private placements or your kids are 22+), it is in most cases not wise without taking a look at important facts. (This flies in the face of the advice given by a mentor special ed attorney who says we all should work where we are asked to if we choose to, but I’m, putting it out there)  It may cross boundaries, and I have witnessed it (with friends) negatively affect the advocate’s and the family’s credibility.  You can’t be fighting for your own kid (actively in conflict), fighting for your neighbor’s, and running your Special Education Parent Advisory Council.  Be a parent advocate where you live for your own kids, not an advocate for other people’s, unless your child is in a permanent placement and there is literally no ability to need to litigate or have an adversarial interaction on their behalf.

*Remember, advocates have few legal protections if your child’s district files for hearing or if you do.  They have none if they are contacted by the Department of Children and Families (formerly DSS) or if God forbid they hold certification in pretty much anything and witness suspected abuse or neglect, for example at school during an observation.  Those of us who are certified are mandated to report, those who are not, are encouraged by our professional organizations to do so regardless.  Our job is to support kids and families.  We don’t embellish ever,  or violate a child’s confidentiality except when questioned by DCF or law enforcement.  An example of this is I witnessed a little one get hurt but pulling a water table down on himself in preschool with the special ed director sitting next to me. He was not being supervised and had many disabilities.  I also witnessed, with a wonderful team chair next to me, a little girl severely affected by autism and not verbal nearly choke heself on a piece of suspended equipment when her aide was looking the other direction (no teacher assigned to the classroom).  The co-observer intervened.   Recently, I saw a para be rough with a child in an ASD room and fail to stop SIBs- I had to report if only to make sure the incident was on record.  Again, my co-observer, a BCBA,  needed to intervene to keep the child safe.

Partner with your educational advocate to work towards the educational programming your child requires.  It’s up to the advocate to keep emotion out of meetings and keep emotions calm and the meeting focused on the child (none of this “Joey is the leader of our class of 15”, like a sample of 15 kids is what we are there to talk about).  It’s not.  We help with formal correspondence (that angry, emotional email you want to send to the school, don’t, put it in your drafts folder, and share your concerns and it with your advocate).  We can’t advocate and talk (even if a parent is not helping their child by what they are saying) if parents talk over us in meetings, so a clear strategy is important to come up with and stick to before a team meeting. That’s why we’re here- to let you be mom and dad. We will guide you in the best direction based on our education, experience, and in many cases relationship with the team.  My job is about relationships more than anything- with families, with districts, with private schools, etc.  You have to play peacemaker with kind force as much as you have to advocate.   This is true for us no matter who the client- if they are pro-bono or paying full rate.

You have to realize your school district staff cares about your child (I hope) but they are not your friends.  If you want to simply be friends with the team, and will back down when a seasoned administrator plays parent vs advocate, you are not ready to hire an advocate so I say this honestly: save your money.

You have to be doing this work for the child.  You have to be a partner with their family.  You have to do this because you are passionate about support children, sometimes that’s by obtaining an outplacement, other times it’s be obtaining appropriate in-class and/or inclusion supports.