Could Decision Aids Help Engage
Parents of Students with
Disabilities?
Natasha Wilson, J.D., Ph.D.
New York University
Robert F. Wagner Graduate School of Public Service
July 22, 2014
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Overview
• Individuals with Disabilities Education Act and
Parental Involvement
• Suboptimal Involvement and
Power/Knowledge Disparity
• Legislative Mechanisms to Improve Parental
Involvement
• Use of Decision Aids within Existing Legislative
Mechanisms
• Application
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THE INDIVIDUALS WITH DISABILITIES
EDUCATION ACT (IDEA)
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Six Principles of IDEA
Principle of IDEA
Requirement
Zero Reject
Locate, identify, & provide services to all
eligible students with disabilities
Protection in Evaluation
Conduct an assessment to determine if a
student has an IDEA related disability
and if he/she needs special education
services
Free Appropriate Public Education
Develop and deliver an individualized
education program of special education
services that confers meaningful
educational benefit.
Least Restrictive Environment
Educate students with disabilities with
nondisabled students to the maximum
extent appropriate.
Procedural Safeguards
Comply with the procedural requirements of
the IDEA.
Parental Participation
Collaborate with parents in the development
and delivery of their child’s special
education program.
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SUBOPTIMAL INVOLVEMENT AND
POWER/KNOWLEDGE DISPARITY
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Is Parental Involvement Important?
• Parents with high levels of involvement at
Individualized Education Program (IEP) meetings have
more positive attitudes towards education
professionals and support their child’s learning
activities, goals, and outcomes more thoroughly than
uninvolved parents (Underwood, 2010, Xu & Filler,
2008)
• Academic achievement is higher when parents are
involved (Bouffard & Weiss, 2008; Epstein, 2001;
Hughes & Kwok, 2007; Hoover-Dempsey & Sandler,
1997; Turnbull & Turnbull, 1997)
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Is Parental Involvement Important?
• The 2005 National Longitudinal Transition Study
(NLTS) (2005): Among parents of children with
disabilities, about one-third wanted to be more
involved in the IEP process
• NLTS2 Wave 4 Parent/Youth Survey (2007):
Approximately 31.5% of all surveyed parents (of
students K-12) wanted to be more involved in the
IEP or transition meeting for their child
(28%/White, 23.2%/African-American,
48.7%/Hispanic)
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LEGISLATIVE MECHANISMS TO
IMPROVE PARENTAL INVOLVEMENT
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Accountability under Indicator 8 - IDEA
• Since 2007, states have been required to report
annually to the U.S. Department of Education, Office of
Special Education Programs (OSEP)
• Extent of parental involvement is one of 20 indicators
pertaining to implementation of Part B of the IDEA (20
U.S.C. § 1416 (a)(3)(A)), in each state’s Annual
Performance Report (APR)
• Parental involvement is captured in Indicator 8 and
described as “[T]he percent of parents with a child
receiving special education services who report that
schools facilitated parent involvement as a means of
improving services and results for children with
disabilities” (OSEP, 2011, p. 107)
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Formal Conflicts under the IDEA
• Approximately 17,000 due process hearings in 20112012
– Number of due process complaints has decreased, but
dispute resolution has decreased and/or reverted to pre2004 levels
– Increase in “more benign” conflict resolution models
• Estimated costs for school district:
– $50,000 per hearing/District Court Level
– $60,000 – 100,000 per hearing/Federal Appeals Court
• Stakes are high and costly for school districts, no
matter the resolution option
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Parent Training and Information
Centers (PTICs)
• Authorized under the 2004 IDEA for use
throughout the U.S. and territories
• PTICs must:
– Provide training to parents of children with disabilities
– Aid parents in communication, collaboration, and
participation during decision-making
• Modest Funding
– Approximately $29 million (2012-2013)
• Relatively Little Scholarly Attention
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PTICs – Preliminary Analysis
• Each PTIC must be registered with the Department
of Education and report annually to the Office of
Special Education Programs
• We have analyzed every registered PTIC website
across U.S. for:
– Number of classes offered
– Types of classes offered
– Availability of classes offered
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PTICs – Preliminary Findings
• Some states have several PTICs; Five states have no
registered centers (Alaska, Delaware, North Dakota,
Oklahoma, and Virginia)
• Variation in scope
• Variation in the type of services offered
• Variation in accessibility to parents
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Decision Aids and Shared Decision-Making
MODEL APPROACH
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Shared Decision-making
• Can cover a variety of “working” relationships
(e.g., patient/providers, educators/parents)
• Aid parties in making decisions that are
informed by the best available evidence about
options, potential benefits and harms, and
preferences
• Done via Decision Aids
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Decision Aids
• Video-based, paper-based, or web-based
resources
• Provide information on medical options,
benefits, and consequences of medical
options
• Aid patients in weighing their values against
outcomes as they make medical decisions
(Stacey et al., 2012).
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Decision Aid Example
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Decision Aid Example
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Use of Decision Aids
Used with:
– Variety of medical diagnoses/treatments
– Patients
• Culturally and Linguistically Diverse
• Low Literacy Backgrounds
• Economically Disadvantaged Backgrounds
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Decision Aid as a Model Approach:
Strengths
• Decision Aids are highly effective at increasing
patient knowledge and perceptions of having
made a “good” decision in research settings
• There are international standards for “good”
decision aids
• There are international clearinghouses for
Decision Aids (Ottawa Hospital Research
Institute)
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Decision Aids as a Model Approach:
Limitations
• Decision Aids have not yet reached the “tipping
point”
– Affordable Care Act of 2010
• Limited use due to several factors
– Acceptability to providers who may not embrace
Shared Decision-Making
– Time Constraints
– Ownership Issues
– Lack of economic incentive
– No public reporting mandate
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Implication of Clinical Medicine’s
Experience with Decision Aids for
Special Education
• Knowledge/methods used to create “good”
Decision Aids are potentially useful here
• A “good” Decision Aid is only one component of
parental involvement
– Local Educational Agencies (LEA) must be committed
to Shared Decision-Making
– Decision Aids must be accessible
– May need a mix of carrots and sticks to get providers
to use Decision Aids
• Funding is available, but it must be used wisely
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IN APPLICATION
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Using the Model Approach in Special
Education
•
•
•
•
Karen
She has a son (age 7, 1st grader) recently
diagnosed by a medical professional with
Asperger’s Syndrome
Karen has no prior experience attending or
participating in IEP meetings
High school education only
To prepare for her first IEP meeting, Karen asked
a few friends around her neighborhood if they
had ever been to an IEP meeting, but none had
children with disabilities
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How might Karen be Engaged Via
Shared Decision-Making and Decision
Aids?
• Facilitate Communication
– Pre-IEP meeting individualized information
• Questions to ask
• List of Preferences
– Aid in understanding a variety of social/behavioral and
academic interventions prior to IEP meeting when
stakes are lower
• Barriers
– Transportation/Computer Access Costs
– Rapport
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Conclusion
• There are a variety of parental concerns that
could be aided with use of Decision Aids
• Legislative mechanisms exist
• Non-uniform infrastructure currently in place
• An integrative approach to use infrastructure
in place and to aid parental involvement is key
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