Dear Colleague Letter and Resource Guide on Students with ADHD

(July 2016)

On July 26, 2016, the U.S. Department of Education’s Office for Civil Rights (OCR) issued guidance clarifying the obligation of schools to provide students with attention-deficit/hyperactivity disorder (ADHD) with equal educational opportunity under Section 504 of the Rehabilitation Act of 1973.

The guidance provides a broad overview of Section 504 and school districts’ obligations to provide educational services to students with disabilities, including students with ADHD. The guidance:

  • Explains that schools must evaluate a student when a student needs or is believed to need special education or related services.
  • Discusses the obligation to provide services based on students’ specific needs and not based on generalizations about disabilities, or ADHD, in particular. For example, the guidance makes clear that schools must not rely on the generalization that students who perform well academically cannot also be substantially limited in major life activities, such as reading, learning, writing and thinking; and that such a student can, in fact, be a person with a disability.
  • Clarifies that students who experience behavioral challenges, or present as unfocused or distractible, could have ADHD and may need an evaluation to determine their educational needs.
  • Reminds schools that they must provide parents and guardians with due process and allow them to appeal decisions regarding the identification, evaluation, or educational placement of students with disabilities, including students with ADHD.

The Department also released Know Your Rights: Students with ADHD (PDF, 180 KB) which provides a brief overview of schools’ obligations to students with ADHD.

Read the complete letter and guidance at: (PDF, 955 KB)

Every Student Succeeds Act (ESSA) Provisions for Juvenile Justice-Involved Youth with Disabilities

(June 2016) | Useful to Parent Centers in understanding the changes in the education law, ESSA, in reference to youth involved in the juvenile justice system.

This presentation by Kate Burdick, Juvenile Law Center & Legal Center for Youth Justice and Education, provides an overview of important provisions in the Every Student Succeeds Act regarding youth involved in the juvenile justice system.

This presentation is 24 minutes in length and can viewed at:

PowerPoint presentation available at: (PDF, 1.23 MB)

Every Student Succeeds Act Provisions Regarding Homeless Children and Youth: Implications for Students with Disabilities

(2016) | Useful to Parent Centers when working with homeless youth and their families.

This presentation provides information on important provisions of the Every Student Succeeds Act (ESSA) for homeless children and youth that impact students with disabilities.

Presented by Patricia Julianelle, Director of State Projects and Legal Affairs for the National Association for the Education of Homeless Children and Youth (NAEHCY).

This presentation is 26 minutes in length and can be viewed at:

PowerPoint presentation available at: (PDF, 513 KB)

Every Student Succeeds Act: Students with the Most Significant Cognitive Disabilities

(2016) | Useful to Parent Centers in understanding how ESSA differs from NCLB on alternate assessments, standards,  and alternate diplomas.

This presentation provides an overview of the Every Student Succeeds Act provisions regarding Alternate Assessments on Alternate Academic Achievement Standards for students with the most significant cognitive disabilities.

Presented by Ricki Sabia, Senior Education Policy Advisor for the National Down Syndrome Congress.

The presentation is 14 minutes in length and be viewed at:

PowerPoint presentation available at: (PDF, 1.21 MB)



History of the Inclusion of Students with Disabilities in Assessments

(June 2016) | Useful to Parent Centers in understanding how inclusion practices have changed over the past 50 years and to reflect on how reauthorization of IDEA will build on the new education law, ESSA.

In this presentation Dr. Martha Thurlow, Executive Director of the National Center on Educational Outcomes (NCEO) traces the history of the inclusion of students with disabilities in large-scale assessments over the past few decades. The presentation is 36 minutes in length.

Recording of the presentation available at:

PowerPoint presentation available at: (PDF, 1.2 MB)

Accessing the Dream: Preparing Deaf-Blind Youth for a Self-Determined Life

(June 2016) Useful to Parent Centers, schools, and families in supporting early learning of self-determination skills and planning for life after high school.

All young adults who are deaf-blind need extensive transition planning and services in order to experience success in adult life. Transition Institutes have historically sought to bring together young adults and their families to build skills and provide training in the pursuit of better personal transition outcomes. These institutes are a collaborative effort across 21 State Deaf-Blind Projects over a span of 10 years. The energy of the 2012 and 2015 Transition Institutes provided opportunities to capture interviews with youth, families, and service providers to share their perspectives on the experience of transition.

This video product is based on the Taxonomy for Transition Programming developed by Paula D. Kohler, Ph.D. The video chapters offer insight and understanding based on foundational best practices in transition planning: Student-Focused Planning, Student Development, Interagency Collaboration, Program Structure, and Family Involvement.

View the collection of videos at:



Buzz from the Hub | July 2016

Image of the earth next to a computer and mouseTheme: Tools for Your Website

Welcome to the July 2016 edition of Buzz from the Hub, the newsletter of the Center for Parent Information and Resources (CPIR). This month’s Buzz focuses on ESSA as well as tools you can use to keep your website strong, accessible, and easy to use. So we hope the resources below help!

All our best to you, as always,

The CPIR Team | Debra, Lisa, Indira, and Myriam


See other issues of the Buzz

Comment on Department’s Proposed Regulations for ESSA?

The U.S. Department of Education has issued two Notices of Proposed Rulemaking (NPRM) to implement provisions in the Every Student Succeeds Act (ESSA). Care to comment on these draft regulations?

NPRM on accountability, state plans, and data reporting
Fact sheet on the proposed changes
Comments period ends: August 1, 2016
Where to email your comments | At the NPRM link above, you’ll see a green box (to the right) that says “Submit a Formal Comment.”

NPRM on ESSA innovative assessment demonstration authority
Fact sheet on the proposal changes (see 2nd half of the fact sheet)
Comment period ends: September 9, 2016
Where to email your comments | At the link above, you’ll see a green box (to the right) that says “Submit a Formal Comment.”

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New Resources in the Hub on Stakeholder Engagement in ESSA

Here are several recent additions to the Hub library, all of which pertain stakeholder engagement in the Every Student Succeeds Act (ESSA), the latest reauthorization of our nation’s general education law.

What ESSA Requires.
Parent and family engagement and consultation have always been a key piece of this powerful law. This brief provides advocates with a full overview of ESSA’s requirements (and opportunities) for parent, family, and community engagement.

How to engage stakeholders in ESSA.
This resource from the Coalition for Community Schools outlines best practices for engaging stakeholders (including families and organizations representing families) in how ESSA is implemented at the state and local levels. Share with your local and state ESSA decision makers!

Let’s include the Early Learning Community.
The purpose of this Dear Colleague letter from the U. S. Department of Education is to highlight the importance and utility of stakeholder engagement as States and local school districts transition to and, eventually, implement the ESSA, and to provide guidance, resources, and examples of stakeholder engagement for States and districts to consider.

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Spotlight on…Tools for Your Website

Is your website one of your Center’s most valuable assets for reaching families and professionals? We’re sure it is—and we also know how challenging it can be to keep a website up to date, accessible, and organized so that information is easy to find. Here are several resources you might find useful in tackling a job that’s just plain never done.

Checking for broken links.
Broken links are the bane of every person who ever traveled the web. If you’re responsible for the links on your Center’s website, here’s a handy tool for finding the ones that don’t work anymore (curses!).

Keeping your site accessible.
There are lots of web accessibility checkers, but this one’s easy to understand and use. Enter a website or webpage’s URL into AChecker. The software produces a report of all accessibility problems (known, likely, and potential). You may not know enough to fix what’s identified, but hopefully your website manager or consultant will.

Put an Accessibility Statement on your site.
Need examples that show the types of information you might include in your Center’s accessibility statement? Here are 3 “models,” chosen because they include different information: at the PEAK Parent Center, the U.S. Department of Agriculture, and Grinnell College.

Why your nonprofit website needs a privacy policy (and what to include).
The title pretty much says it all.

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Resources You Can Share with Families

Building parent power is hard, dedicated work. Here are several resources you can share with the families you serve.

What’s going on in there (our kids’ brains)?
Brain science sheds light on what’s going on inside our kids’ heads, preschool to 8th grade.

42 simple ways to raise an empathetic kid.
Children are born with the capacity for empathy, it must be nurtured, and that takes commitment and relentless, deliberate action every day and can’t be left to chance.

Summer and sensory processing issues.
Does your son or daughter have sensory processing issues? Here are tips on how to help your child stay comfortable in what can be overstimulating outdoor activities.

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Resources Just for Parent Centers

The work that Parent Centers do covers so many topics, it’s mind-boggling. How do you keep up with such a broad range of priorities? Here are several resources you can use on topics of continuing importance.

Working with Military Installations: Tools and Tips for Parent Center Staff.
Interested in providing services on military installations in your state? This toolkit from the Branch RPTAC is for you.

New regulations for WIOA.
On June 30, the U.S. Departments of Labor and Education made available to the public the final rules to implement the Workforce Innovation and Opportunity Act (WIOA). The new law and regulations include changes to the Rehabilitative Services Act that affect competitive integrated employment, employment outcome, and limitations on the use of subminimum wage (section 511), transition services (including pre-employment transition services and supported employment for youth with disabilities).

State Determinations 2016.
The Office of Special Education and Rehabilitative Services released State determinations on implementation of IDEA for Part B and Part C for fiscal year 2014. The determinations are part of the ongoing efforts to improve education for America’s 7 million children with disabilities. Find out the determinations for each state and the required actions for states not meeting requirements.

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Logo of the Center for Center for Parent Information and ResourcesThe CPIR hopes that you’ve found useful and relevant resources listed in this month’s Buzz from the Hub. Please feel free to write to the editor, Lisa Küpper, at to suggest the types of resources you’d like to see in the future. CPIR’s listening! Your input is extremely valuable to helping us to craft newsletters that support your work with families.

Debra, Indira, Lisa, and Myriam
The CPIR Team


This eNewsletter from the CPIR is copyright-free.
We encourage you to share it with others.

Center for Parent Information and Resources
c/o SPAN, Inc.
35 Halsey St., Fourth Floor
Newark, NJ 07102

Subscribe to the Buzz from the Hub.

Publication of this eNewsletter is made possible through Cooperative Agreement H328R130014 between OSEP and the Statewide Parent Advocacy Network (SPAN). The contents do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government or by the Center for Parent Information and Resources.

Definitions Key to the Parent Center Data Collection Form

Updated July 2016

The data collection form that Parent Centers use to report on their work was revised in January 2015 and has remained virtually unchanged for the 2016 program year. This page provides definitions of key terms, so that PTIs and CPRCs will have a common understanding of the data they need to record and report for this program year (October 1, 2015 to September 30, 2016). For your convenience, we’ve created this online list of the definitions of terms used in the data collection form.

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Terms Used in Sections I, II, and IV

Due process hearings attended (used in Section IV.A3)
Includes attendance to support parents and students at the hearing that is conducted by a due process hearing officer.

Emails/Texts and other electronic modes (used in Sections I.B1c, I.B2c, I.B3c)
Count number of contacts using email or other electronic modes (e.g., text messages, Facebook messages, etc.) specifically for one-to-one individual assistance. Do not include mass e-mails that are for disseminating resources or for outreach activities.

Facilitated IEP meetings attended  (used in Section IV.A2)
Only include IEP meetings that are facilitated by a neutral third party. Do not include IEP meetings that do not meet this description.

IFSP/IEP/504 Plan meetings attended (used in Section IV.A1)
Meetings to support parents and/or students in developing, reviewing, and revising an individual’s IFSP, IEP, or 504 Plan. Include: initial, review/revision, annual, and 3-year re-evaluation meetings. Does not include Facilitated IEP meetings. Facilitated IEP meetings are reported in IV.A2.

In-person meetings (used in Sections I.B1d, I.B2d, I.B3d)
= when a parent center representative meets with individuals in-person for the purpose of providing individual assistance related to a specific child or family. Include the # of individuals who attended the meetings you also report under Section IV.A. Meeting locations may be: the parent center office, the parent’s home (includes “homeless” location or other “home” location), school site, church, coffee shop, restaurant, or other community setting.

In-person trainings  (used in Sections I.A1, I.A3, I.A5)
Count # of people attending trainings presented face to face by the parent center rep (e.g., trainings, workshops, conferences, institutes, forums, etc. that are funded, in whole or in part, by the parent center project). Count attendees based on a visual count, sign-in sheets, registration lists, etc.

Attendees should be counted once for each training attended.

For multi-session events (e.g., conferences or institutes) count attendees in each session that parent center presented.

When presenting multiple sessions at a conference, institute, forum, etc., count individuals who attended each separate session presented.

Count is duplicative (i.e., the same individual may have attended multiple parent center in-person trainings).

Individual assistance (used in Section I.B)
Count # of contacts in one-to-one or small-group settings focused on providing help for a specific infant, toddler, child, youth, or family. Individual assistance includes contacts when the purpose is to provide information, provide referrals to resources, review records, and help individuals prepare for child-specific meetings. It also includes supporting individuals at child-specific meetings.

Count each time an individual assistance contact is made.

Number is duplicative (i.e., the same individual may have had multiple contacts with the parent center).

Letters (used in Sections I.B1b, I.B2b, I.B3b)
Written correspondence regarding provision of individual assistance sent or received by parent center via hand delivery (e.g., delivered by hand or by U.S.P.S or other mail carrier).

Local/community-level systems (used in Section IV.1)
Meetings where the focus is on systems serving children with disabilities (education, health, DD, etc.) within a community, county, school district, municipality, or other governmental unit that is smaller than statewide.

Manifestation determination meetings (used in Section IV.A4)
Includes attendance to support parents and students at each manifestation determination meeting.

Mediations attended (used in Section IV.A5) 
Count attendance to support parents and students at a mediation session conducted by a qualified and impartial mediator to resolve a disagreement between a parent and a public agency.

Meetings attended (used in Sections IV.A, IV.B)
Count every individual meeting attended where the parent center representative’s participation is funded, in whole or in part, by the parent center project. Example 1: It may take 4 meetings to complete an IEP, staff attended all 4 meetings, count as 4 meetings. Example 2: A State Special Education Advisory Council meets monthly, count each of the 12 meetings.

National/federal level systems (used in Section IV.B3) 
Meetings where the focus is on systems serving children with disabilities (education, health, DD, etc.) and are national in scope.

Parent (used in Sections I.A1, I.A2, I.B, II, III.D, IV.A)
Biological or adoptive parent of a child; foster parent; guardian; individual acting in the place of a guardian or adoptive parent (grandparent, stepparent, or other relative with whom the child lives); surrogate parent; other family members (such as sibling, other relative), parent advocates (who are unpaid IEP partners, parent mentors, etc.).

If someone is both a parent of a child with a disability & a professional/other, count them as a parent.

Phone call (used in Sections I.B1a, I.B2a, I.B3a)
Each individual telephone call to an individual or received from an individual related to providing individual assistance. Do not count text messages here; count text messages under “Emails/Texts and other electronic modes.”

Professionals/others (used in Sections I.A3, I.A4, I.B2)
Includes anyone who is not the “parent” or “student” such as: special education and general education school staff, principals, administrators, related services personnel, board members, providers, disability agencies and organizations, medical personnel, other types of providers, attorneys and other professional advocates (paid), etc.

If someone is both a parent of a child with a disability and a professional/other, count them as a parent.

Resolution meetings (used in Section IV.A6)
Includes attendance to support parents and students in resolution meetings that are required to be held when a parent has requested a due process hearing.

State level systems (used in Section IV.B2)
Meetings where the focus is on systems serving children with disabilities (education, health, DD, etc.) through a state or territory.

Student (used in Sections I.A5, I.A6, I.B3)
Count children, youth, and young adults with disabilities who have not aged out of Part B education services.

Suspension/expulsion hearings attended (used in Section IV.A7)
Includes hearings attended by parent center representatives to support parents and students in suspension and expulsion hearings.

Unduplicated number of parents served (used in Section II)
Count only the actual number of individual parents served during the reporting period for whom you have contact information (e.g., phone number, address). The same parent may have participated in a number of workshops and received individual assistance multiple times; but for this data point, count each parent only one time. Example: If Jane Smith attended 5 trainings, called the center 10 times, and was supported in 1 IEP meeting and 1 mediation, she would only be counted as one (1) parent served.

Virtual trainings (used in Sections I.A2, I.A4, I.A6)
Parent center presentations delivered using methods that are not in-person and that are funded, in whole or in part, by the parent center project, including:

Training using live web or phone conferencing technology or other live electronic methods;

Training delivered via access to parent center presentation materials (e.g., recordings of webinars, phone conferences, print versions of trainings, on-lined self-paced trainings, etc.) available via parent center’s website, mail, e-mail, or other methods used to reach parents that are not in-person.

The data worksheet asks for a count of people who attended such virtual trainings. Count attendees based on:

Registrations received for the virtual event, number of participants seen on the webinar attendance list during the conference, on roll call, or in conference log for phone conference.

Number of electronic training files/materials (DVDs, workbooks, etc.) mailed or emailed.

Number of pageviews reported in web analytics for on-line trainings (recordings, powerpoints, modules, etc.)

Number is duplicative (i.e., the same individual may have attended multiple parent center virtual trainings). Individuals should be counted once for each virtual training attended.

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Terms Used in Section III (Demographic Information)


A. Federal Disability Categories

Unless otherwise noted, the definitions of each term in IDEA can be found at:

Autism  (used in Section III.A1) | As defined in IDEA.

Deaf-Blindness (used in Section III.A2) | As defined in IDEA.

Deafness  (used in Section III.A3) | As defined in IDEA.

Hearing Impairment (used in Section III.A4) | As defined in IDEA.

Developmental Delay (early childhood) (used in Section III.A5) | As defined in IDEA.

Emotional Disturbance (used in Section III.A6) | As defined in IDEA.

Intellectual Disability (used in Section III. A7)  As defined in IDEA.

Multiple Disabilities (used in Section III. A8)
Please note that a child who has more than one disability is not included as a child with multiple disabilities. Please only include in the category of “Multiple Disabilities” those children who have been identified as meeting the definition of “multiple disabilities” as defined in IDEA.

Orthopedic Impairment (physical) (used in Section III.A9) | As defined in IDEA.

Other Health Impairment (used in Section III.A10) | As defined in IDEA.

Specific Learning Disability (used in Section III.A11) | As defined in IDEA.

Speech or Language Impairment (used in Section III.A12 ) | As defined in IDEA.

Traumatic Brain Injury (used in Section III.A13) | As defined in IDEA.

Visual Impairment including Blindness (used in Section III.A14)  As defined in IDEA.

Children who may be inappropriately identified (used in Section III.A15)
Include in the category the number of families who contacted you for individual assistance who have a child who may have been inappropriately identified as being a child with a disability due to lack of appropriate instruction in reading or math, cultural factors, environmental or economic disadvantage, or limited English proficiency.

Children where a disability is suspected or not yet identified (used in Section III.A16)
The number of families who contacted you for individual assistance who have a child who is suspected of having a disability but who has not yet been identified as having a specific disability or who has not yet been identified as having a disability to determine eligibility for IDEA.

Disability not disclosed (used in Section III.A17)
The number of families who contacted you for individual assistance who chose not to disclose their child’s disability status.

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B. Ethnicity Definitions

Hispanic or Latino (used in III.C)
A Latino or Hispanic person is of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race.

Undisclosed (used in III.C)
A person who declines to disclose his or her ethnicity.

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B. Race Definitions

African-American/Black (used in III.C)
A person having origins in any of the Black racial groups of Africa. It includes people who indicate their race as “Black” or “African American” or use a term such as Kenyan, Nigerian, or Haitian.

American Indian/Native American/Alaskan Native (used in III.C)
A person having origins in any of the original peoples of North and South America (including Central America) and who maintain tribal affiliation or community attachment.

Asian  (used in III.C)
A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent including, for example, Cambodia, China, India, Indonesia, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam. It includes “Asian Indian,” “Chinese,” “Filipino,” “Korean,” “Japanese,” “Vietnamese,” and “Other Asian.”

Caucasian/White (used in III.C)
A person having origins in any of the original peoples of Europe, the Middle East, or North Africa. It includes people who indicate their race as “White” or use a term such as Irish, German, English, Scottish, Italian, Lebanese, Near Easterner, Arab, or Polish.

Native Hawaiian/Pacific Islander (used in III.C)
A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands. It includes people who indicate their race as “Native Hawaiian,” “Guamanian or Chamorro,” “Samoan,” and “Other Pacific Islander.”

Two or more races (used in III.C)
A person identifying as being multi-racial, inter-racial, or mixed race.

Undisclosed (used in III.C)
A person who declines to disclose his or her race.

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Terms Used in Section V (Outreach and Dissemination)

Exhibits, poster sessions, resource fairs—events attended (used in V.A4)
Count the number of events attended by parent center representatives who are funded, in whole or in part, by the parent center project.

Exhibits, poster sessions, resource fairs—materials disseminated (used in V.A3 )
# of materials disseminated at activities or events (not including events counted as “trainings”) where parent center publications, products, or promotional items are handed out or picked up by individuals. Events may be information tables, conference exhibits, poster session presentations, etc. Materials distributed are funded, in whole or in part, by the parent center project.

Materials disseminated (used in V.A3) 
Count number of publications (fact sheets, brochures, etc.), products (CDs, DVDs, flash drives, etc.), and promotional items (bookmarks, business cards, logo items like key rings or can openers) given to or taken by event participants.

Media events held (used in V.A6)
An event or activity that exists for the sole purpose of media publicity. It may also include any event that is covered in the mass media or was hosted largely with the media in mind. This number should not include trainings, workshops, or conferences.

Newsletters disseminated (used in V.A1)

Count the total number of parent center periodicals distributed (print or on-line newsletters, magazines, e-newsletters, etc.).

Count print periodicals mailed or handed out.

Count number of subscribers or recipients of newsletters sent via e-mail.

Count number of pageviews of newsletters posted on parent center’s website.

 Social media reach (used in V.A2)
The total number of people you were able to reach across all of your various social media networks. Use data from parent center’s social media accounts/pages, including Facebook, LinkedIn, Twitter, Google+, and other social networking platforms. Count includes number of followers, connections, “Likes,” members, etc.

Website page views (used in V.A5) 
Count the number of pageviews. A pageview is each time a visitor views a page on your website, regardless of how many hits are generated. This is not the same as “hits.” These data are generated by your web analytics program.

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Parent Center Data Collection FAQs

Woman looking questioninglyUpdated July 2016

In Part 1 of the data collection process, Parents Centers will use the data collection worksheet and accompanying definitions key to report:

  • numbers of contacts with parents and professionals;
  • an unduplicated count of parents served;
  • demographic data on children (e.g., disability, race, ethnicity) and the primary language of parents;
  • numbers of meetings attended by staff; and
  • outreach and dissemination activities.

In Part 2 of the data collection process, Parent Centers will survey some of the families they have served in the last six months of this program year (April 1, 2015 to September 30, 2016). This part of data collection is now called the Program Measures Survey (formerly the Impact Survey).

On this Frequently Asked Questions (FAQs) page, the CPIR and RPTACs have posted the questions you asked about last year’s data collection tools and processes, along with answers to those questions. We also offer several sample scenarios, to illustrate how to record and report your work with families and professionals. And there is also a Sample Script for Collecting Race/Ethnicity Data (in Word).

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Frequently Asked Questions about Part 1 of the Data Collection Process 

Question 1: What is the reporting period for Part 1 Data?

Part 1 data collection covers Parent Center activities for the 12 months beginning October 1, 2015 and ending September 30, 2016.

Question 2: What is the deadline for the Part 1 data submission?

The deadline for completing the online submission form for your Part 1 data is Thursday, November 19, 2016.  It is important that you submit by the deadline, as your unduplicated count of parents served is required in order to determine the numbers of surveys that each Center will complete in Part 2 of the data collection (as mentioned above, the Program Measures Survey, formerly known as the Impact Survey).

Further below, we explain how your Center’s unduplicated count of parents served will be used to determine how many surveys your Center will complete in Part 2.

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Question 3: What happens if, at this point, our Center cannot get an unduplicated count?

Your data system may not automatically produce an unduplicated count, but your data system has a list of every person that you were in contact with for TA or training.  If your system does not generate such a list , you will have to go through the lists of TA and training contacts and eliminate the duplicates.  One approach may be to generate your list, then generate it into a Word, .csv, or Excel file, then sort it alphabetically by last name and hand delete any duplicates.

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Question 4: Is a person served in multiple years a new person every year?


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Question 5: Regarding disability categories, a Parent Center may have categories that may not fit into any of the categories listed.  What do we do?

We know that the listing of disability categories does not include all of the types of issues parents face when they contact your Center (children at risk, discipline issues). Therefore, report the information you have for the disability categories that are listed in the Data Collection worksheet.  We know that it won’t add up to your total contacts.

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Question 6: Regarding reporting on demographic information, if we serve families multiple times in the same year, do we provide an unduplicated or a duplicated count?

Depending on their contact management system, Centers may find it easier to respond to the counts in the demographic data items as a duplicated count or an unduplicated count (see the sample scenarios). Just let us know which way you are reporting the numbers.  The online submission form asks, “Are these data based on a duplicated or unduplicated count?”  This is where you indicate which way you are reporting it.

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Question 7: Where do we count ADHD/ADD?

If students have an IEP, they would be under whatever IDEA disability category (e.g., OHI, ED). If they don’t have an IEP, they can be counted under #III.a.16—that is, “disability is suspected or not yet identified.”

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Question 8: What to do when someone identifies themselves as two races?

Count the person once – use “Two or more races.”

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Question 9: What do we do when a lot of people at a training do not check the box for Race/Ethnicity?

Count them as “Undisclosed.” During an in-person training, you can do a visual count of those that you know for sure.

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Question 10:  In the past, we have counted press releases & media PR in with Media.

Now you should count how many Media “Events” actually occurred. You would not count the number of contacts between the center and the media representatives.

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Question 11: If we mail a newsletter to 1,000 people quarterly, do we count that as 1,000 or 4,000?

Count as 4,000 for all the mailings together. If you post your newsletter on your website or to social media, be sure to also count the number of visits to your newsletters in all of these various venues.

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Question 12: When I go to upload my data on the Smartsheet form online, is there a way to save my information and go back to it a day or two later, or do I have to complete it all at once? Will it time me out if I leave for a few hours and come back to finish it?

Knowing that you may not be able to complete your submission in one session, you can save and return—here’s what to do.  Save/Submit when you are ready to take a break, then send Debra Jennings of CPIR an email. Debra will send you a link requesting that you update your information. Then you can continue entering data. Rinse and repeat, as they say, or make your final submission when you’ve entered all your data for the year. Debra’s email is:

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Question 13: Where are Centers supposed to count individuals who are assisted or who attend trainings who are young adults who have aged out of Part B and are not parents or professionals?  They don’t meet the definition of students because they have aged out of B.

The center should include youth/young adults up to age 26 in the “student” counts and include a note in the comments section.

Note | In the contacts session, we talk about “students.” In the demographics section, we include “graduated/aged out.”  Instead of saying “students,” we should probably revise the language next year to say “youth/young adults,” since the parent center priority says birth to 26.

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Question 14: In Section 5 (Outreach and Dissemination), for the Social media numbers, if I have 2509 likes on our agency Facebook page, and during the reporting period we posted 116 posts, what do we report?

For this year, just report the number of total likes as of the end of the reporting period. If you’d like to note the number of posts in the comments, feel free to do so.

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What to Do With Your Unduplicated Count 

As described in the September 17, 2015 webinar, a new process was piloted last year for selecting the pool of parents who will be asked to complete the Program Measures Survey. That process is linked to the “unduplicated count” of parents served that Centers report in Part I of the data collection process and includes the following steps:

  • Each Parent Center generates an unduplicated list of parents served this past program year.
  • Each parent on the Center’s list is assigned a unique code or identifier.
  • All Centers provide the CPIR with their list of these unique codes or identifiers (not the names of parents or any personally identifiable information).
  • Several of the unique codes or identifiers on each list will be randomly selected.
  • CPIR provides each Parent Center with a list of the codes or identifiers selected for its Center.
  • Each Parent Center then matches the codes or identifiers to their list of unduplicated parents served, and now knows the pool of parents to ask to participate in the Program Measures Survey.

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Our list includes parents’ contact information. So what do we send CPIR?

You just send the list of unique identifiers you created. Be sure to maintain your original list so that you can connect the unique identifier to specific parents.

To illustrate, here’s a sample list of parent names and phone numbers generated by a Parent Center—in this case, YOUR Center. To the right, you can see that each parent has been assigned a unique “contact code.”

Sample list of parents, their phone numbers, and the unique code they've been assigned





You would send only the list of “contact codes” to the CPIR for selection of participants. No personally identifiable information is shared.

Let’s say that 2 codes are selected: the first and the last. You would receive back from the CPIR those 2 codes (in this example, 1010 and 7777).

Using your original list, you can match the codes to the parents’ names and know who to ask to participate in the survey. Your Center is the only one that knows who had been assigned those codes.

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So we don’t send CPIR names, only the contact codes?

Yes, that’s correct. Send only the contact codes.

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I would like to understand the benefit of CPIR having the code of a family.

The collection of the Program Measures Survey will be truly random across the Parent Centers.  In order for it to be random, someone has to generate a random list of participants.  In this case, the CPIR will generate the random list for each Parent Center but will need to have a coded list of participants to generate that list.

Assigning every parent a unique code and providing CPIR with only the unique code is an ironclad way to protect the personally identifiable information of the parents and child. CPIR will never know the identity of the family behind the unique code, only the Parent Center involved will know. In this, CPIR is an intermediary facilitating the random selection of families to participate in the Program Measures Survey.

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With respect to the “Unduplicated Number of Parents Served”:   We usually get complete contact information from parents receiving individual assistance. However, we don’t always get complete contact information from parents attending training – often just email or phone or address or nothing. Do we include them if contact information is incomplete?

You should only include contacts for which you have either a phone number or an email address, so you will have a way of contacting them with the Program Measures Survey.

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Quick Jump Links

Parents for Healthy Schools: A Guide for Getting Parents Involved from K–12

(November 2015) Useful to Parent Centers in working with parents and getting them involved in the school nutrition environment and services; physical education and physical activity; and managing chronic health conditions in schools.

The purpose of this guide is to explain how the resources for Parents for Healthy Schools can be used with and for parents. Resources for Parents for Healthy Schools are designed to motivate and educate parents to help create healthy school environments and give parents ideas for how they can learn about and help with

  • Improving the school nutrition environment and services.
  • Increasing opportunities for physical activity in schools (i.e., comprehensive school physical activity programs).
  • Supporting schools in managing chronic health conditions.

View the guide at:   (PDF, 9.08 MB)