Saturday, January 1, 2011

How Caregivers can Partner with Educational Professionals (Making Things Easier All Around for Everyone)

No you’re not seeing double-last month I covered partnering with medical professionals.  So I decided to help parents start the New Year right in collaboration with their school districts.  Remember you’re in this long term and it’s better to work with, not against, the schools.  I know sometimes it’s not easy. 

In fact, our transition from the wonderful early intervention program was difficult.  My daughter Stephanie was homebound as medically fragile due to kidney disease until she was almost six.  When we finally got the green light, the district wanted to send her to a full day program 45 minutes away for students with cognitive disabilities.  This was a child who had never been out of the house and still napped so physically it wouldn’t work for her and the program setting wasn’t appropriate.  I decided if they didn’t want her in district, they wouldn’t take good care of her and as her condition was life-threatening, I wasn’t willing to risk it. 

I do NOT recommend this (ended up working two jobs to pay tuition/therapies) but we disenrolled her and she went to a regular preschool and kindergarten program.  We later moved to a better district where I now run the parent special education advisory council and a supervisor of child study is our liaison with our board of education, which will also soon have a special education subcommittee. 

Where can parents find help on special education?

So how did I get from mediation/complaint investigation in my former district to this great collaboration in our current district?  First and foremost, I had to learn about my child’s rights and the district’s responsibilities.  I contacted my Parent Training and Information (PTI) center (the Statewide Parent Advocacy Network in NJ, and started attending workshops, conference calls, and getting their newsletters.  I read the federal special education law as well as the NJ Administrative Code which was the state special education law (note:  you may only need to read on a particular topic such as transition).  Another good site was Wrightslaw where parents can search by topic. 

What are some of the things parents need to know?

  • Our children are entitled to a Free, Appropriate Public Education (FAPE).
  • Our children have the right to the Least Restrictive Environment (LRE) and the first consideration should be to attend the school they would have attended if they didn’t have a disability.  Inclusion is mutually beneficial for children both with and without disabilities due to the utilization of “differentiated instruction” (e.g., not just lecturing to a group) resulting in better academic outcomes.
  • There has to be a continuum of placement options as close to home as possible. 
  • Alternative placement only occurs if appropriate supports and services were unsuccessful
  • There is a homebound program, usually used for extended illness, in which children receive instruction at home as well as related services (therapies such as speech, occupational or physical therapy, counseling, etc.) if needed.

How can parents use this knowledge to work with their children’s schools? 

First and foremost be prepared ahead of time to document everything.  Before any meetings or discussions, review your notes.  Keep your case manager informed of any major changes that may affect your child in school such as changes in health, new diagnosis, etc.  

Get a copy of the IEP draft prior to the meeting and have questions ready.  Remember, parents are equal members of the IEP team that drafts the document and also makes any placement decisions.  I always check the draft against the previous version to make sure I didn’t forget anything. 

The important thing is to keep the focus on the child.  It’s not what the parent wants or what the district wants; it’s what the child needs.  Also, in considering alternatives such as placement, visit and ask team members what they think rather than demanding this is where your child will go – remember, it’s a team decision! 

In more difficult situations, it’s good to back up your requests for services by saying why under state or federal law.  A good example of this is our state’s “annotated IEP” found at which shows applicable regulations for each section.

On a more practical level, keep things running smoothly by collaborating with the school on things your child needs in school like special supplies.  Ongoing, respectful communication is key.  For example, if possible give medications at home.  If your child is on a special diet, provide all snacks and meals. 

For example, my daughter can’t have fluoride anymore so we even supply bottled spring water.  She has special toileting hygiene recommended by Children’s Hospital and we trained staff as well as have all her supplies like wipes, etc.  She was on a food thickener and caloric supplement which we premixed in her food.  We have a one page checklist to communicate daily with school on all her needs. 

For students with complex medical issues, parents can develop an Individual Health Plan to attach to the IEP. Even though everything is in the IEP, it’s good to have this document as well.  For example, I don’t want my daughter’s invisible disability of kidney disease which is life threatening, to be overshadowed by her obvious behavioral issues due to autism.  I would be happy to email parents a template IHP that I used for my daughter and the district used verbatim (so I guess I did a decent job!) if you contact me at .

Increasing collaboration with your district

  • Belong to your PTA where you can also bring up special education issues
  • Attend your local Board of Education meetings and participate in public comment
  • Participate in a local parent special education group (In NJ and some other states, there’s one in each district)
  • Attend workshops with your IEP team if possible.  For example, there are parent/professional team meetings held by our Department of Education and other advocacy groups like our PTI.
  • Attend meetings of your State Special Education Advisory Panel and provide public comment. 
  • Write letters to the editor or provide testimony at public hearings on special education issues.

Research indicates that parental involvement is THE most important ingredient to improve educational outcomes for all children.


Remain Hopeful,





Parent Training and Information Centers  


Individuals with Disabilities Education Act (federal special education law)

(Note:  Your PTI can help you find state special education law)




State Special Education Advisory Panels (click on state contacts on left panel)


Individual Health Plans (add to IEP for medical needs) 


  1. Lauren:
    You are a remarkable person and mother. Everyday I am blown away by your knowledge. I am so thankful to have met you and for your assistance with dealing with declassification issues with my son, Aaron.
    I think I speak for the general public when I say THANK YOU for all of your support and guidance.

  2. Hi Kelly!
    Wow-thanks so much!