Exploring Collaboration With Families: Building Bridges and Removing Barriers

1. Exploring Collaboration With Families: Building Bridges and Removing Barriers Dr. Vanessa Tucker, Ph.D., BCBA-D Pacific Lutheran University Infant and Early Childhood Conference Friday May 3rd 2013

2. 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

3. 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.

4. 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.

5. 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?

6. 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.

7. 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?

8. Going Beyond the Basics

9. 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.

10. 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.

11. 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?

12. 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.

13. 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.

14. 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.

15. 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.

16. 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.

17. 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.

18. 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…

19. 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?

20. More on Input • First, consider prevention. Let’s talk about the IEP meeting…

21. 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!

22. 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).

23. 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.

24. 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.

25. 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.

26. 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.

27. 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

28. 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.

29. 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.”

30. 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.

31. 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.

32. 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.

33. 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,

34. Remember… You are here The Family Connection Continues Long After We Are Gone…

35. Time For Questions, Cases, Concerns • We will leave time open for discussion! • tuckerve@plu.edu