Parent Perspective of the Integrated Services Stakeholders Meeting
January 4, 2010
On December 9th and 10th stakeholders invested in a wide array of integrated services in PPS gathered together to review data from the recent audit of special education services and make recommendations on next steps.
My “stake” in this is as a parent of a child with an IEP in the district and as someone that cares deeply about better outcomes for those receiving special education services.
On the first day the stakeholder’s were presented with the faces and stories of integrated services. First we watched a video about special education that featured parents, grandparents, students, and staff; this video will be linked on the PPS website.
Carole Smith and Xavier Botana spoke to the group and then we heard from Joanne Mabbot the director of Integrated Services and others within the department or the audit team. The parent/grandparent panel spoke and we were given about 3 minutes each to tell our stories.
The objective feedback I received from some in the audience was that our panel represented parents that were savvy and made the system work for them. Weeks prior to the stakeholders meeting the department acknowledged a desire for more diversity on the panel and asked for help from the parent/grandparent stakeholders.
Sheila Warren, parent union organizer, spoke about her own experiences on the video and panel and also about her efforts to include those under-represented voices. During both days I was relieved to hear from many stakeholders a deep concern for equity and a desire to bring in the voices of foster parents, parents with disabilities, low-income families, minority families, and children who live in group homes or mental health facilities. In several side conversations there was an overall commitment to finding a way to capture these stories.
During my 3 minutes on the parent panel I talked about my dilemma of choosing belonging over academics. My teacher works very hard to educate my daughter and has a great team of supports to meet her academic IEP goals. Despite this, I know in my heart my daughter needs more 1 to 1 help to meet her academic potential and her teacher has not yet learned to clone herself or grow 50 arms and 25 heads.
For now, I choose friends, meaningful activities, and natural environment learning because that is what our family has decided is most important. I told a story about how my daughter cried when I told her about advancing to 1st grade. Through her tears she could barely get out the words, “I am going to miss my friends so much.” I wish I could bottle the relief on her face when I told her that her friends go to 1st grade too.
I used this story at the meeting as a way to highlight the importance of belonging and that “loneliness is the only real disability” (a quote by Beth Mount). Since this is an opinion piece I want to be clear that I am not complaining about the choice I have made or the education my daughter is receiving.
I would love it if my daughter’s school was a student-centered technological wonderland that was set up to have universal access and honored the multiple intelligences and every teacher had training in modifying curriculum for all learners. I would be thrilled if my daughter could just have access to an ordinary education in a low enrolled PPS school!
Regardless, I have the luxury of a choice some parents of kids with IEP’s don’t have. My complaint is that I have had to engineer my experience of special education on my own with mentoring from other parents I was lucky enough to meet and learn from.
How do we teach other parents what I know on a widespread basis? How do we share with other teachers what my teacher knows about how to help kids with IEP’s be successful in general education classrooms? Why is it word of mouth and not common knowledge? What is it with what seems like a purposeful effort to keep parents in self-contained classrooms from communicating?
To be fair, one of the recommendation from the two days was for parents to opt-in to be contacted by other parents for networking and this received a lot of votes.
The student panel was wonderful and I was inspired by the teachers and staff that clearly have a vision of presumed competence in the 18-21 transition programs. The job developers and students told us about the Solar Waffle Cart on Alberta and how many of the students in transition dream of being small business owners.
There was not a hint of contrivance on the part of the transition staff and they were dreaming big right along with these kids. A young man who has had a job at Fred Meyer for 5 years told his story and thank goodness for the tissue on the table. It is amazing how much this young man has cared for others in his life and how much loss he has endured but still he has a deeper sense of gratitude than anyone I know.
We heard from a Roosevelt student who has an IEP for a learning disability and how difficult it was to get her academic needs taken seriously.
What was missing on the student panel were students with physical disabilities who cannot access neighborhood schools or common areas in schools deemed accessible. What about the students in wheelchairs that cannot go to lunch with their friends because the cafeteria only has stairs? What about the kid who has to commute 45 minutes one way in good traffic to school because his “special” classroom is across town? What about the clusters of kids with disabilities who clean, landscape, recycle, shred, and do food service for free and have it called “work experience?”
To clarify my last statement; it is not the nature of the work itself but the fact that a minority group is singled out to do this work before the age of 18 when academics should be a priority along with transition services. I know countless kids who would not be happy with me if I took this work away from them but I know a few who have asked me, “How come I have to clean up after everyone and they don’t, it’s not fair?”
The point I was able to get out on day two of the forum was that if this work experience is such a great opportunity then the general education population needs to have the equity extended to them as well to work side by side with the kids with disabilities. This may actually happen in some schools and I would love to hear about it. Not all schools use the kids in transition programs to do work in the school and find real experiences in the community for them.
We heard from a panel that included an assistant principal, counselor, special education teacher, paraeducator, and a general education teacher. I appreciated what the panel had to say and the tone was notably different than the parents and students.
The paraeducator in particular really brought it home when she talked about the day to day tasks such as being bit, having your hair pulled out, a great deal of heavy lifting, dealing with various bodily fluids on a daily basis, and changing diapers on adult sized students.
I worked in direct care for kids and adults in group homes and have done similar work as a paraeducator with the exception being I did not also have to meet IEP goals while providing this level of support. When you do this work you just care about these kids having positive outcomes and the less glamorous, dangerous, and unpleasant parts of the day are part of that.
As I have alluded already, there was a real need to get the spectrum of experience injected into this event and the employee panel kicked it up a notch. There were some wince-worthy moments as a parent listening to the panel but I had also wished for a reality check and got one.
I do wonder what the range of experiences are in teachers and how much knowledge they have of what happens in other schools or programs. When the paraeducator talked about changing diapers someone in the audience said, “EWWWW” and it broke my heart. How dare they? That is someone’s child who should be given dignity and respect despite their toileting ability.
My opinion is that cross-training and job shadows in different schools, programs, and classrooms might not be a bad idea. Better yet, administrators need to see a day in the life of a teacher in all schools and classrooms.
When I worked in group homes and a corporate administrator was visiting the expectations was that we would spend days cleaning and painting in preparation. We would purchase new clothes for the residents, furniture, and decorations for the home. During some of these corporate visits the administrator would simply walk through the home straight to the office or leave after 10 minutes and we would wonder why we bothered.
Is this what is happening in PPS when administrators visit as well? Are PPS administrators just spending 10 minutes or heading straight to the office? What would happen if they saw the real deal? Would things change or would someone get fired or transferred?
On day two of the stakeholder’s meeting we had an opportunity to look at the data from the audit and from the data create a “gallery walk” of recommendations to be voted on as a top priority or secondary priority. The recommendations are still being boiled down to account for duplicates and common themes but the current data shared with stakeholders shows that the following areas rose to the surface:
- Collaboration time among general education, special education, and specialists along with collaborative team-teaching
- System-wide curriculum for academic and behavior intervention such as RTI and positive behavior supports
- Limiting the number of building to building transitions students in special education make
- More feedback from under-represented voices
- Other topics included more training time, more opportunities for parents to connect and feel welcome, community partnerships, being assigned based on your expertise, technology, Universal Design, equity in electives and curriculum in special education (Pioneer Special Schools in particular), and adopting ODE modified diploma standards. I am barely scratching the surface in variety of responses.
One of the highlights for me out of the two days was the presentation on Universal Design given by William Macklin from the assistive technology team. In all honesty I thought his presentation was a bit heavy on the overpriced computer software for reading but overall it made me feel better as a parent that Universal Design exists in the vocabulary at PPS.
After his presentation I had a reality check moment when I asked an administrator and teacher I was talking with about ensuring that all of the schools knew about the Universal Design technology PPS already had available for teachers. The response was that if everyone knew it existed then there would not be enough for everyone to access. The other snag with assistive technology is that only students who qualify can actually use the technology. Getting qualified requires more of that educational engineering on the part of parents and teachers that are actually aware the resources exist. There has to be a better way!
The next steps are that stakeholders meet again in February to begin action planning with the facilitators and PPS. I really hope that positive steps forward are the result of this audit and stakeholder process. I am still new enough to the public education process that I can still hope while being politely irritating (insert responses about my face in the dictionary under gullible in the comments:) ) . I left the two day event feeling positive but with even more questions and reservations about what this change to Integrated Student Services is going to look like. The director of Integrated Services started a blog and has a post about the finer details of the two-day event.
This was just a summary of my take on the two day event. I would love to hear from others who attended and everyone who has a stake in this.
Question: I am part of a subcommittee with the state looking at how to improve the quality of life for children with autism in Oregon. One of the recommendations is mentoring high school kids to become autism and behavior consultants. There are not nearly enough consultants in the state and the CDC just announced the numbers have increased to 1 in 110 children having autism nationwide. What do you think about electives or focus options being offered in topics like autism and behavior analysis?
Stephanie Hunter is a behavior consultant and the parent of a student at Ockley Green. She is active in local and statewide advocacy for children and adults with disabilities, which she writes about on her blog Belonging Matters.
