Evan’s Take: The Lehigh University Special Education Law Symposium: Report 1


Prepared by Evan Farrar, M.A., PWSA (USA) Family Support Counselor

Last week I represented PWSA (USA) and the PWS community at the Special Education Law Symposium sponsored by the College of Education at Lehigh University in Bethlehem, PA.  http://coe.lehigh.edu/law Participants came from 19 different states and the Marianna Islands to attend the symposium.  Most were attorneys for school districts, special education school administrators (state and local levels) and special education teachers.  I was the only person attending from the rare genetic disease community and a disability related family support agency.  I believe my participation, on behalf of PWSA, (USA) represented our agency’s deep and abiding commitment to being on the cutting edge of providing special education support services for our families.  My goals for the week were:

  • To learn more about the perspective of school districts, their administrators, and the attorneys who represent them.  This is an important part in the continuing process of determining how PWSA (USA) can best position itself to encourage and promote healthy and effective working partnerships between parents and schools to benefit children with PWS.
  • To continue learning about the constantly evolving complex world of special education law.
  • To share what I learn with the PWS community.
  • To network on behalf of PWSA (USA)’s Family Support Program with experts in the field of special education law.
  • To spread PWS awareness by sharing information about PWS with symposium presenters and participants.

Over the next couple of weeks, through a series of post-symposium reports, I hope to give you a sense of what I learned at the symposium.  If you have questions or would like to join our new PWS specific Special Education Advocacy e-list contact me at cic3@pwsausa.org.

Day 1:    Symposium Opening      June 23, 2013


The Symposium began with a keynote presentation by Melody Musgrove, the Director of the Office of Special Education Programs (OSEP).  OSEP, a department of the U.S. Department of Education is dedicated to improving results for infants, toddlers, children and youth with disabilities ages birth through 21 by providing leadership and financial support to assist states and local districts.  Director Musgrove’s presentation was entitled, “The IDEA:  Reflections on the Partnership, Past, Present and Future. “  Highlights of her presentation included:

  • The recognition that, despite continuing challenges, progress has been made under the IDEA.  The IDEA was designed, in part, to provide access for students with disabilities to a public school education.  According to Director Musgrove, prior to the IDEA – and key related court decisions that formed the foundation for the IDEA – in 1970 U.S. schools educated only 1 in 5 of the nation’s children with disabilities.  In contrast, today 57% of students with disabilities are in general education classrooms for 80% or more of the day.  350,000 infants and toddlers receive early intervention.  And 6.7 million children and youths receive special education and related services (source: www.IDEAdata.org).
  • While there is a need to continue supporting access, the most urgent challenge is to create an educational system that produces life changing positive outcomes for students with disabilities.  Director Musgrove cited employment statistics for people with disabilities as one measurement of our failure.  Presently 3/4 of adults with disabilities are unemployed and 1/3 of adults with disabilities live below the poverty level.
  • The fact is that – on this goal – our education system is failing students with disabilities in part because our system has increasingly been built on compliance with regulations in schools rather than creative teaching and problem solving.  And, not surprisingly, on compliance nationally the educational system excels.  For example:
  • Evaluations of student with disabilities in a timely fashion are up from 84% in 2006 to 96% in 2010.
  • The trend of resolving written complaints in a timely fashion has risen from 93% in 2005 to 96% in 2010.
  • The trend in providing accurate data has increased from 95% in 2005 to 97% in 2010.
  • The trend in timely transition of students with disabilities has risen from 79% in 2005 to 96% in 2010.

On paper, this might look good.  But statistics beyond simple compliance reveal a troubling reality for students with disabilities.  For example:

  • Trend in reading proficiency was 35% in 2005 and 36% in 2010.
  • Trend in math proficiency was 33% in 2005 and 35% in 2010.
  • Overall graduation outcome rates for students with disabilities during the same time period stayed at 60% graduating and 20% dropping out.

The lesson is clear.  The actual progress of students with disabilities has at best stalled and at worst declined.   We need less emphasis on compliance, for compliance’s sake, and more emphasis on creating better outcomes for the sake of students with disabilities.  As Director Musgrove stated, “The way we work needs to change.”

  • Towards that end, Director Musgrove described several initiatives of OSEP to make compliance issues less burdensome so that time, energy, resources, and minds can be freed to think and work creatively to improve outcomes for students with disabilities.  One key initiative is called Results-Driven Accountability (RDA) and you can learn more about it at http://www2.ed.gov/about/offices/list/osers/osep/rda/index.html   Don’t be thrown by the dry bureaucratic title of this initiative.  It was born out of OSEP’s decision to take a break from some of its compliance functions to relook at what it’s been doing and discard what isn’t improving the lives for students with disabilities on the local school level.  It is not about getting rid of healthy compliance – which is necessary – but rather to rethink the process and change the current approach to compliance when it gets in the way of student progress.  Because the performance gap between students with disabilities isn’t closing as it should – and as the congress intended it would – when the IDEA was formulated.

Reflections on Director Musgrove’s presentation:

  • As Director Musgrove spoke I was surprised – and pleased – by how many of her concerns mirror the concerns I hear from parents and professionals in the PWS community.  I heard a lot of common ground which is heartening.
  • This common ground became even more apparent during the question and answer session. Teachers and administrators discussed their frustration with the focus on compliance and the difficulties in making the system work appropriately for students with disabilities.
  • Along those lines, Director Musgrove spoke often of “shared responsibility” in improving the special education system.  For the system to work best, we each need to play our part in a healthy and balanced way.  Teachers need to teach effectively, administrators need to administrate competently, and parents need to advocate consistently for the special education system to make progress.  It is not going to be easy.  But it is essential as the US Congress boldly declared in the preamble to IDEA 2004 which states:

Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society.  Improving education results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.

Including every student with PWS!

About pwsatoday

PWSA (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.
This entry was posted in Prader-Willi Syndrome Awareness, Resources, Support, Uncategorized and tagged , , , , , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s