This document provides background information on Jane Strauss and her experience navigating the educational system with her son who has multiple disabilities. It details her son's early interventions, preschool, grade school, and home school experiences. It then describes the challenges of his transition to public high school, including lack of appropriate class options and untrained staff. The document outlines accommodations provided, IEP goals for school staff, and the progression of developing his IEP plan over his first two quarters in high school. It concludes with basic principles of engagement for parents of children with complex needs.

1. Pitfalls and pratfalls in navigating the educational
system with a focus on competence and inclusion
Jane Strauss
Minneapolis, MN
Autistic, Parent, Advocate

2. Background

Disability Experience
− Classic “twice exceptional” childhood
− Began working in disability field in 1970s
− Sequential re-definitions of disability,
typical of 2-ex autistic females, Autism
diagnosis in middle adulthood
− Became active in disability rights starting
in 1979
− Advocacy experience began in 1972

3. Background

Educational Experience
− BA Urban Ecology (biology, urban studies, social
work)
− BS Ed (minor: Sp Ed/child development)
− Graduate study, theology and medicine
− JD, MAPA; emphases on medical and disability law,
ethics, public policy
− Teaching experience from preschool through
postsecondary

4. Background

Parenting Experience
− Five children, all with some special needs
− The family is intersectional; disability with minority
culture/religion are factors
− Experience with public, nonpublic, charter, and home
education
− Experience as coparent, married parent, single parent
− Resources have generally been limited, low income,
requiring creativity and new ideas
− 28 year span of experience

5. Background

The case in question:
− Youngest child, male, currently 17 years old
− Classification for school purposes is POHI
− Actual disabilities cross categories
− Navigation of first, medical, and then, educational
systems resulted in the need to provide interpreting
from one group to the other
− Significant educational needs resulted in cultural
conflicts and unique combination of settings
− Motor and expressive speech provided a challenge to
staff in their making assumptions regarding cognition

6. Timeline

7. Timeline

8. Timeline

9. Early History
1997: Born, emergency C Section, PPHN,
ECMO x 10 days, NICU x 42 days, Home
with NG tube, O2 monitor, RN visits 3x/week

1997: EC evaluator did first assessment
when home 24 hours. Recommended Early
Intervention.

1998: School District delayed intervention
to age 6 months, and even then had to
“override” to give services, even though
lacking in trunk stability, ability to hold up
head, and eye hand coordination.

2000: School District continued to minimize
services, other than offering “in center,
multihandicapped classroom”(ie. Segregated
setting.)

10. Preschool

Started in inclusive contracted preschool program 3x a week, with 2x a
week in religiously/culturally appropriate main streamed setting.

Parents applied for PCA services through MA, and a PCA
accompanied him to the alternate program.

School objected to the inclusive programming, and parent declined to
sign their ISP until inclusion was mandated. (Other party to the contract
thought it an appropriate placement, though District insisted he was
“too disabled.” Huh. Wonder if that could have been because of their
providing minimal services for birth to 3?)

Day camp with a 1:1 in culturally appropriate setting provided
socialization and skills development in the summer time.

School declined to assess for computer skills/assistance even though
he could not mouse. Parent took him for assessment at 3.5 years, he
was offered AAC device at that time and said his first sentence. Did
not talk on a regular basis in sentences for another year.

11. Grade School

Deferred grade school as long as possible – started Kindergarten at
nearly 6 years of age, in small cultural-religious school half days with
PCA, and home school for general studies.

At age 7, general developmental delay category was changed to
“Physical and other health impaired” due to varied medical issues.

Grades 1-middle of third, a charter school that claimed to be
specialized for individualized needs, but whose staff lacked skills in
computer based accommodations, undermined home toileting
program, failed to utilize accommodations recommended by their
contracted ed. Psych.

By middle of third grade, had lost skills in numeracy and toileting, and
the only thing he was doing well was spelling.

School presumed severe cognitive impairment, too much pull out time,
no expectations, he was being bullied (only Jew in the school) and they
did nothing, and staff rewarded “I can't” by not making him do anything.

Poor immune function resulted in illness 1-2 weeks of every month.

Sooooooo.......the only option was

12. Home Education

Process of discovery – Working around the glitches

Word processing

Worksheet Wizard

Kindle

Math Pad Plus

Out-stubborning the child – “I can't” is not spoken here.

Holding the District accountable to provide services needed, and only
services needed.

Participation in classes at parks, rec centers, other locations, both
those specifically for home school and those not, including Scouts

Building in daily living skills as part of the day – laundry, cooking, use
of money, cleaning.

Using flexible time to fine tune documentation of barriers to learning or
everyday function

Continuous progress model – year round school to the degree
possible, and no “social promotion”.

13. Home Education Benefits

Service delivery models developed

Inclusive DAPE (for 4 years)

Group speech, as this facilitated pragmatics

Shared instruction with 1:1 aid

Curriculum accommodations

Low incidence visual impairment documented

Skill Catch-up

Math

History/social studies

Reading fluency

Community integration

Therapies at the local public High School- to meet other students in
the area and services offered in context of an art class (OT/Speech)

Public transit – bus training built around independent travel to the HS

Scouts

Travel

Religious community

14. Developmental Issues

Developmental delay

By age 16, catching up with typical teen resistance

Interest in peers has increased

Child expressed interest in stopping learning- gave options: continue
learning at home or go to public high school

Held accountable for own decision – not to complete work

School enrollment

Most long-term home education families with special needs kids do
not successfully return to school

Schools tend to want compliance from both parents and students –
not collaboration.

Transition at change of term was helpful

Transition into the local school, at which therapies already
established

Some staff were already familiar with parental insistance on LRE

Unfortunately, some staff were unable to comprehend LRE.

15. Transition

Challenges

Limited math options available: mainstream is Algebra, other is 3-4
grade for presumed significant cognitive impairment

A state complaint re: DAPE was pending at time of transition.

Usual procedure is that SEA changes EVERY HOUR – not good for
a student with transition issues

Principal stated his view:”Good you are sending him here, it will give
him a chance to fail”.

Vision instructors not trained for low incidence visual impairment.

Some staff had turf issues with a POHI student not jumping through
hoops for labeling

Benefits

Some staff were familiar with the student and parent, and supportive
of accomodations and high goals.

Students from the inclusive DAPE program at a local elementary-
middle school already knew the entering student.

Transportation was already familiar and available.

16. Transition Procedure

Pre-meetings

Enrollment, including the Assistant Principal for 9th
grade/special ed

AP confirmed lack of need for busing

AP confirmed need for 1:1

Registration, finding classes for next term

Goal was at least 2/3 inclusion

Some non-inclusion was due to academic levels and student
needs not matching the classes available

Curriculum accommodations presented

Strategy for being certain that there was no question regarding goals

List of Accommodations used/needed

“Goals” for school staff

Clear expectation: Parental responsibility to teach survival skills –
transition. School responsibility is ACADEMICS. This caused some
consternation.

17. Accommodations (as presented)

All work completed on computer

Individualized writing and math due to the uneven skills. I can provide math
curriculum at his level

Untimed testing, in separate setting

Open book testing

Access to times tables and division tables in some format until solidified, due to
short-long term memory and Executive Function issues

Segregation is NOT acceptable

No DAPE, and no Social Skills if it conflicts with Ceramics

Generally requires 1:1 for maintaining focus

Was excellently taught to pretend cog. Impairment in his previous school
setting, and will perform to the level of the lowest functioning person in the
room.

Behavior is OK as long as there are no expectations and he is not told he
cannot do whatever he wants to do. Then it escalates until he is the center of
attention or not required to do any work.

Your challenge is to NOT reward inappropriate behavior by lowering
expectations or making him leave school.

18. Staff ISP Goals
These are intentionally written in “IEP terminology.” They are GOALS for
school personnel. They are high goals because school personnel are
Professionals. Every one is based on observed behaviors over more than
a quarter century dealing with public schools, as a teacher and a parent.
1)School personnel will demonstrate on task behavior by adjusting goals
when initial goals are achieved rather than attempting to terminate
services, on every opportunity presented.
1)On 9 of 10 opportunities, school staff will not reward the student or
punish the parent for the student's inappropriate behavior.
1) Sending the student home and prohibiting him from being in
school is rewarding the student.
2) Permitting the student to do no work is rewarding the student.
3) Engaging in an argument with the student is rewarding the
student.

19. 3) School personnel will demonstrate understanding of the concept of
“presuming competence”.
1) Staff will provide the accommodations needed for the student at all
times. Accommodations needed for texbook use will depend on the
layout of the textbook, due to the student's visual disability.
2) Staff will ask the parent if the accommodation does not appear to be
working, and will work COLLABORATIVELY with the parent and student
to resolve the issue.
3) Staff will not hand the student a calculator for basic math instead of
explaining the process to the student. Calculators do not teach.
Teachers teach.
4) On 9 of 10 opportunities, staff will not accept “I can't” as a response,
without determining whether the statement is attempted manipulation or
based on an actual difficulty, and, if the latter, addressing the issue.

20. 4) School personnel will provide good models for spoken and written
English to the student. (Please note: the information provided about
ID cards to the parent yesterday did not have “ID” spelled correctly)
1) Notes sent home with errors will be blue penciled and returned to
the school administration.
2) Personnel interacting with the student, whenever possible, shall
have command of standard spoken Amercan English, and shall
accept correction of their grammar by the student when it is
incorrect. (The student's ability to correct grammar is a
STRENGTH, and has been remarked upon at previous IEP
meetings.)

21. 5)School personnel will demonstrate knowledge of the law by:
1) Including parent input in every set of notes on every meeting.
2) Meeting the student's needs in the Least Restrictive Environment
in all areas.
3) Providing the parent with the opportunity to review all curriculum.
4) Problem solving with the parent in the loop when methods do not
appear to be effective.
5) Regular and accurate communication with the parent, on at least a
weekly basis.
6) Giving at least one week, or if possible four weeks, of notice of all
meetings, so that both parents can attend.
6) On a sustained basis, nine of ten days, school personnel's behavior,
actions, or inaction will not necessitate the parent's filing a complaint,
contacting the District, spending more than 1 hour in a day during
working hours interacting with school, District or regulators, or
spending more than 3 hours daily teaching the student.

22. Progression of an IEP Plan
First Quarter

4 hours inclusion, 2 hours “Special Ed”

History, English, Ceramics (taken previously) and Piano in main
stream

Math (due to lack of appropriate class availability) and Study Skills as
Special Ed

Issues:

Principal was openly hostile to the parent

Initial “case manager” was hostile to the student and the parent,
and her behavior exacerbated behavior issues. She refused
training in accommodtions and complained to the principal.

Other Staff were not trained in use of accommodations, and parent
could not train them due to administrator hostility

In the middle of the term, parent indicted that there was no FAPE if
staff were not trained in application of accommodations, and that
student would be doing work at home until training was arranged.

IEP (which was not acceptable) was mailed the day after parent
filed a complaint with the state Department of Education

23. Progression of an IEP Plan
Before and during home based programming

Student was ill 12 school days of the first 4 weeks of term, and had a
number of explosive incidents.

Communication was poor and often inaccurate.

AP checked in with the parent each morning until and after the parent
removed the child, pending training arrangements for staff

A new case manager was assigned, which required that the parent
clear a “cross-programmatic” assignment with the Director of Special
Education

Parent took student to visit other (charter) options in the area

Materials were emailed to the home, completed using
accommodations, and emailed to the school.

Parent continued to request that training be set up for staff.

Alternate schedule based on experience of the first 6 weeks of
attendance was discussed for second term.

After the parent did not accept the proposed IEP, n a number of
grounds, a conciliation conference was set.

24. Progression of an IEP Plan
Conciliation Conference

Equal numbers of District and other persons.

Both sides were tape recording.

New case manager (who knew student better) made a huge
functional difference

Verbally, issues appear to be resolved, however this is a work in
progress and the written IEP offer has not yet been received.

Training was set up and occurred within less than a week of this
meeting

All participants acknowledged verbally that administration gaffes and
staff miscommunication had contributed to issues

Modification of schedule and of school rules were both
acknowledged as possible needs.

25. Progression of an IEP Plan
Term 2

Student returned to school the day after the conciliation conference.

Shortened attendance at school, (5 class periods) and math
completed at home, with grading provided to the school.

Most academically intensive classes are in the morning (history,
english, study skills)

Staff training was set up for the Thursday of that week and the
following Monday.

Less academically intensive classes are scheduled after lunch period
(ceramics and piano).

School rules were set up to be reviewed with the student on return
the day after the conciliation conference

The goal is to have no more than two SEAs in a given day, in order
to minimize transitions.

In the first three days back at the school, there have been no
explosive episodes, and good class participation.

26. Basic Principles of Engagement

Don't assume that professionals know anything about your child

Children with medical issues appear to frighten and confuse many
educators.

Schools generally do not deal well with students who have multiple
overlapping issues and dont easily fit into a single “box”.

When possible, try, as closely as possible, to approximate the number
of personnel on the school or medical payroll with the number who are
not.

Do your homework. Bring written notes, and document the issues you
are bringing to the table. If nothing else, this catches the others off
guard, as they often assume that parents lack competence.

If there is any question in your mind about the intentions of the school
or medical institution, openly record any meetings.

If there is any question about the intentions of professionals involved,
be sure there is a paper or electronic trail.

27. Who Needs Exposure to DS?

Administrators – they tend to assume

That there is no need to accommodate parental disabilities

That deficit based services and low expectations are appropriate

That setting children up to fail is perfectly OK

That the goal of “compliance” is not complying with the law, but
pushing parents to comply with whatever the District wishes to
provide.

Special Ed teachers with more than 10 years on the job

Many appear to believe segregation is the “gold standard”

Paperwork and turf appear to trump reality and individualization

A segment of this group may have entered the field based in pity

Therapists

Most work from a medical or deficit model

They do not appear to be trained in observing strengths or interests
and using those to develop areas of relative weakness