Exploring Collaboration With Families: Building Bridges and Removing Barriers

Dr. Vanessa Tucker, Ph.D., BCBA-DPacific Lutheran University

Infant and Early Childhood ConferenceFriday May 3rd 2013

Our Agenda Today

• Introductions• Obligations and Benefits of Working with

Families (IDEA Part C and B Review)• Case Study Scenarios and Exploration• Causes of Barriers to Collaboration• Exploring Facilitators of Collaboration• Action Planning and Next Steps

Introductions

• Please introduce yourselves to your table or row mates:

• Who are you (professionally and/or personally)• What brought you to this particular class• What do you hope to take away from today’s

training?• Now, introduce your table/row mates to the

larger group.

Including Families: Our Requirements

• Collaboration with families is a requirement under IDEA and is evidenced by:

• Full membership within the IEP team, evaluation team and process, and any other school-related activity,

• Access to information used to draft documents, report progress, etc.

• Access to notice, opportunities to attend meetings as mutually agreeable times, access to copies, notice of procedural safeguards.

Why the Emphasis?• Let’s take a brief look at the historical trajectory of the

family’s role in education and health care, a parallel experience.

• Professional Dominance:• An idea espoused in health care, and to a large extent

in education, that says “Doctor knows best.”

• Evidenced by:• “Your child needs this, should have this, I know best.”• This has changed as the medical field has responded

to increasingly empowered parents.• Has the educational field kept up with this change?

Professional Dominance

• Led and still does lead to:• Marginalization of families from the school

system (who are already outside of the system, as non-paid, non-personnel)

• Unequal relationships• Perceptions that others know better than the

parent• Decisions that might not match the family’s

core values, cultural norms, or needs.

A Case Study

• Enrique-Age 3• Read the case study at your table or row• Discuss-where do you think things went

wrong?• Brainstorm-what could this team do to get

things going right again?

Going Beyond the Basics

Experiences of Families with Special Needs Children

• In your row or table:• Use the graphic organizer at your table to

compare and contrast:• Experiences of families with typically

developing children to those who have children with disabilities.

• Be prepared to share these with the larger group.

What We Don’t See• As professionals, we have a very limited viewpoint of family

experiences…• In essence, we are a “point in time” on a much larger time span.• Hidden things:• A) Status as “outside of school team”• B) Hidden costs of raising a child with special needs• C) Necessity to spend longer hours, provide intrusive and private

information, work from a system that is by nature not forthcoming with information

• D) Marginalization by other families within the school system who do not understand the family’s experience, the child’s behavior or their unique needs.

Parents Experience:• More frequent reports of challenging behavior,• Unwritten to outright scrutiny by others regarding their

parenting skills, especially if their child’s disability does not have a physical component,

• Professionals who say they “understand” their experiences without walking a mile in their shoes,

• Too little information to make good planning decisions,• Input from many more providers, outside and inside, which

can either agree or conflict,• Pressures from outside groups regarding methods of

treatments,• Professionals who just want to pin everything on a “grieving

process”• What are some other things that are not on this list?

Barriers to Collaboration

• These represent things that occur via school actions, or family circumstances, whether intentional or not (most often, not intentional).

• Each will be discussed separately, followed by a discussion of actions that facilitate collaboration.

What is true collaboration?

• Contributions are made and accepted by a group whose members are considered equals in terms of status.

• This does not mean:• A) Parents have veto rights. • B) Parents can direct the entire program.• This does mean:• C) Parents should have equal status.• D) Parent input should be as important as all other

input, in whatever form it comes.

Discussion Topic: In General

• Most parents will already have a very well defined opinion about education based upon earlier experiences:

• -The process to diagnosis• -The process to access services• -Experiences with early services• -The advice they’ve gotten from others• -The experiences with their family, and supports

available• -Their personality, cultural beliefs, attitude toward

disability and toward education in general.

Advice Here

• Listen-let them tell you their stories starting with diagnosis or the journey to diagnosis.

• Ask-find out what the family needs, how you can match your services to their priorities or help them to find needed services.

• Inquire-find out where they have been getting information and what effect that has had on treatment choices.

• Find out-what has been problematic in the past with others. • Think-there are many hidden costs associated with

parenting a child with a disability. These may definitely influence the life of the parents in ways you don’t realize.

Hidden Costs• Financial:• -One spouse may need to quit their job to care for the child (often this is

the mother)• -Need for increased amount of co-payments for therapies, time to drive and

stay with child at therapies, time to access medications, equipment, and other necessities.

• Supports (social)• -Families may or may not have good support systems that allow them

informal childcare and emotional support.• -Friendship choices may change as the parents realize that their former

friends cannot relate (or appear not to)• Community (social)• -Childcare is harder to access, especially for children with serious medical

problems or behavioral challenges.• -Typical community settings may be difficult to access, such as church, the

grocery store or the park.

Why is this important?

• Knowing these things can help those of us who cannot (in most cases) relate to the experience to:

• A) Avoid making assumptions,• B) Move to a place of support,• C) Recognize what is and what isn’t in ours or the

parents’ control,• D) Understand that there are way more things

going on in the life of that parent besides school.

Discussion Point: Input

• Parental input is a right under IDEA.• Barriers:• 1. Professionals viewing parents’ input as unnecessary or even

threatening/unwelcome (who is she/he to tell me how teach?)• 2. Failing to get any input at all or provide parents with the

opportunity to give planned input.• 3. Not providing the parents with all information possible (what

is allowable).• 4. “Stacking the deck” when parents ask for things. In other

words, the 2 person meeting becomes an 8 person meeting, and so on…

Input

• What are your experiences?• What do you see as the barriers to input that

exist?• What are some strategies you have used or

consider to increase parents’ input?

More on Input

• First, consider prevention. Let’s talk about the IEP meeting…

Parental Experiences at the IEP Meeting

• Some parents report that at their first meeting:• 1. They do not remember their first meeting,• 2. They did not understand the process,• 3. They were uncomfortable with the number of

people present,• 4. They were told to “sign the paperwork”• It is important to note that not all experiences

are negative like this. Some are very positive!

Parental Experiences: IEP Meeting

• In general:• A) Parents often feel that they don’t have time

to digest information, as it is given to them AT the IEP meeting,

• B) There are many people, too much information, too much to take in,

• C) They don’t have time to consider options, or to make informed decisions (or feel that they are deterred from this).

How Can We Set Parents Up for Success Early?

• 1. Thoroughly explain the process in parent-friendly terms. The procedural safeguards are still full of jargon.

• 2. Offer to give any documentation (DRAFTS) in advance and offer to go over them.

• 3. Avoid jargon OR if it needs to be there, carefully explain it to the parent.

• 4. Let parents know what to expect! Don’t be afraid to tell them who is going to be there, what the purpose is, what it is like, etc.

• 5. Always encourage them to bring an advocate with them, someone who can take notes.

As well…

• Seating is important…it says volumes.• Facial expressions and where you put your

eyes (and other non-verbals) should be carefully guarded. Parents watch for these things and can pick up on frustration.

• Use of preventative tactics, such as preparing in advance for what is going to be discussed, etc. can be extremely helpful.

The Bottom Line is…• We have to remember what it is like for parents as they sit in an IEP

meeting:• A) We are talking about their child,• B) We are talking about their child’s strengths but also their weaknesses,• We need to help parents understand that:• 1. Their child is a child first,• 2. We recognize that we are not experts in the life of this child, we play a

role, but it is time limited,• 3. We are not insinuating that the child’s behavior is due to their

parental shortcomings (this is an assumption that some parents make, and it is important to navigate this openly),

• 4. Parents have knowledge of their child, family and circumstances that we simply don’t have,

• 5. Parents may or may not have the background to fully grasp the vocabulary we use. We owe it to explain this fully.

Back to Input• Facilitators:• Drafts given in advance,• Consider priorities from home, as well as parents’ advice,• Outside providers:• Parents consider outside providers as extensions of their own

input.• What are the rules and considerations of this?• Treat outside input the same as you would parents’ input and

attempt to bridge it with everyone else’s.• Don’t be afraid to say ‘Help me understand’ if you get stuck.• Inform when changes come.• Offer parent training in techniques or curriculum.

Discussion Point 2: Communication

• Parents want and need to collaborate. In order to do that, they need to receive and participate in tailored, appropriate communication.

• Imagine the parent of a child who is non-verbal asking her child “How was your day?” as compared to the typical one…

• Parents of children who cannot recount details will:• A) Assume that challenging behavior may be the result of

something that happened at school,• B) Will naturally feel very left out of the day to day events

of the school, and therefore the potential collaboration

Communication: Common Missteps

• 1. Only calling or emailing when something has gone wrong,

• 2. Sending out the same communication to everyone,

• 3. In addition to #1, only calling or emailing when it is IEP time,

• 4. Returning phone calls, emails or other attempts in a less than timely manner,

• 5. Engaging in negative interchanges.

When Things Go Wrong

• If communication becomes a barrier, parents may:

• A) Stop communicating, especially if every communication attempt is to report something negative about their child,

• B) Find the form of communication inadequate, and either withdraw (stop) or become aggressive and begin to “up the ante.”

Why is Communication so Vital?

• Partnership means frequent and meaningful contact to work on mutual goals,

• Parents may be able to give you information that would lessen a problematic situation (e.g. we try this, it usually works)

• Frequent and regular communication builds trust and familiarity

• Regular communication makes the parent a part of the team, rather than a token member who only appears at meetings.

Supporting Strong Communication• 1. Develop, from the outset, a communication plan tailored to

the family:• A) What kinds of communication work best for you? (and what is

least preferred?)• B) What frequency works best?• C) When is a good time to talk on the phone, meet in person,

etc.?• D) How do we “triage” certain situations?• Also, make a point, when connecting with families, to provide a

higher ratio of positive vs. negative contacts. • Point for administrators: Make contacts for more than just IEP

meetings or when things have gone wrong.

Other Suggestions

• Develop a “point person”-all communication is funneled through this person, who delegates out.

• If the parent is upset, engage in active note-taking. Repeat back to the parent what you have in your notes to ensure accuracy.

• If things get heated on email-stop immediately. Ask for a phone call and document everything out of email.

• -Why? Email is decontextualized and is not a good form of communication.

• Attempt to communicate positives whenever possible, and use examples-pictures, stories, and other tangibles whenever possible.

General Supportive Tactics

• Consider monthly meetings/dinners to discuss IEP and/or other special education related issues, or have guest speakers,

• Consider “unbirthday parties” and other gatherings for parents to meet and talk,

• Actively find ways for parents to engage in the school as volunteers. This is a normal activity available to all parents, yet many times ours feel left out.

• Invite your administrator to non-IEP related activities so that your parents associate him/her with positive activities,

Remember…

Infancy

Preschool

Elementary

Middle School

High School

College or Vocational

The rest of my life

You are

here

The Family Connection Continues Long After We Are Gone…

Time For Questions, Cases, Concerns

• We will leave time open for discussion!• tuckerve@plu.edu