Conversations with Parents and SLPs about Early Intervention

1. Conversations with Parents and SLPs about Early Intervention Metro Speech-Language Symposium, 2012 Kathleen Fahey University of Northern Colorado KatherynBoada Children’s Hospital Colorado Shannon Robel Life Care Center - Greeley

2. Learning Outcomes • Recall general trends in research about parent involvement in early intervention • Describe the characteristics of a qualitative case study • Consider themes from parents and SLPs regarding early intervention • Discuss implications of the themes for working with parents and their children

3. Early Intervention Defined • Early intervention is a broad term that refers to a wide variety of therapy activities intended specifically to enhance the development of young children who are at-risk for or are developmentally delayed or disabled (ASHA, 2008; Ramey & Ramey, 1998). • Part C IDEA includes children birth to three who are developmentally delayed, disabled, or are at-risk for delay (American Speech-Language-Hearing Association [ASHA], 2008). • Part B IDEA (three to five) also eligible for services in early intervention and preschool settings (ASHA, 2008).

4. Early Intervention Defined • Infants and toddlers cannot be appropriately served in isolation from their families. Services are to be centered on families and children within the context of families' activities and routines (American Speech-Language-Hearing Association, 2008b, p. 2). • Because communication growth relies on social interactions, early intervention often takes on play-based forms, occurs in natural environments, and utilizes natural communicators—the child‘s family members (American Speech-Language-Hearing Association, 2008a, p.3).

5. Early Intervention Defined • IDEA, 2004 and NCLB 2001 stress the importance of family/school partnerships as a more meaningful method of educational intervention rather than a child-focused strategy alone (Knight & Wadsworth, 1999). • We define early speech-language intervention to include children from birth to 5 years or prior to entrance into kindergarten.

6. What do we know about parents and early speech-language intervention? • Only nine studies target parent perceptions in early speech-language intervention. • Larger body of work regarding parent perceptions of a wide variety of services available to children ages birth to five and school-aged children. • Themes in the literature: Participation, Access to Services, Information, Support, Finances, Time

7. Purpose of Study What Perceptions do Parents and SLPs have about Early Intervention for Children with Speech-Language Disorders? Our focus was to explore parent and child needs, barriers to parent involvement, and speech-language pathologists’ perspectives on working with families.

8. Qualitative Case Study A qualitative case study seeks to uncover meanings and represent the voices of the participants. Researchers use focus groups, interviews, and observations to explore topics related to the research question. Researchers use descriptive data to discover and interpret themes.

9. Qualitative Case Study Participants • Multi-site: 5 RiteCare supported clinics in Colorado • 15 caretakers (parents/grandparents) • 7 SLPs who provide early speech-language intervention and 15 SLPs in a focus group at a conference Researchers Faculty Lead Investigator and C0-Investigator 2Graduate Students at UNC - Theses

10. Qualitative Case Study • Methodology • Individual interviews and focus groups • Open-ended questions to promote dialogue and gain insight • Researcher field notes and journals • Analysis for identifying themes • Using themes to create a collective perspective

11. Themes: SLP Roles & Factors Affecting Parent Participation • The SLP’s Role 1) Parent-SLP Relationships 2) Experts & Educators 3) Target/Maintain Functionality for Children & Parents 4) Resource 5) Refer, Recommend, Navigate

12. Themes: SLP Roles & Factors Affecting Parent Participation 6) Factors Impeding Parent Participation • Timely and appropriate referral • Access to information about who, when, where • Availability of services • Waiting lists for services • Amount of effort to find and coordinate services • Cost and inadequate insurance support • Time for therapy and homework

13. #1 Parent-SLP Relationship • Understanding and supporting feelings • Reality of daily life and situations • Special relationship between parent and SLP and the child and SLP • SLPs remind parents of progress and developmental journey • It‘s an intense, it‘s an emotional bond and you feel like they‘re the only other person that really gets it.”

14. Parental Emotional Response • We were struck by the emotive words from our parents! • Crying Satisfaction with Progress • Frustration Acceptance of Disability • Stressors Alone • Exhaustion Helpless • Overwhelmed Fear of Failure • Drained Empathy • Pressured Don’t be Complacent • Burned-out Afraid • Worried

15. Parent-SLP Relationship: Emotional Response - Parent Voices Expectations and concern – present and future • “I don‘t try to set a lot of high goals for him. I don‘t know what his capacity is, so you protect yourself.” • “To actually say, Yes, he has a disability just brought me to tears. It was devastating for me to speak it, because when you say it, it's your accepting it. That was very difficult because you want your kid to be normal. I don’t care how perfect or how much I love him, it is still hard for me to realize what he’s not going to have and not going to be.” • “You feel alone and you worry about your son. When Sandra first told me “verbal apraxia,” I looked it up and I cried all afternoon and “oh my gosh this is so bad.”

16. Parent-SLP Relationship: Emotional Response - Parent Voices Anticipation of events • Is he going to be able to talk? Ever? And she was like, ‘I think so. I can’t say.’ And that’s super scary.” • “I am ridiculously anxious about kindergarten. I really am, which is so funny that I am more nervous, he’s ready to go, he can’t wait, he’s excited!” Parents need to see progress. • “Sally would say, ‘Hang in there. He's doing great, and she reminds me of all the things he was doing or she‘ll show me his test, ‘Look where he was and look where he is!’ Do you know what I mean? That constant feedback. He‘s growing, he‘s still learning. It‘s slow, but he‘s still learning.”

17. Parent-SLP Relationship - SLP Voices Information, reassurance, validation, support • “I think, especially the parents that I am working with right now, the majority need to know that their kids are okay…they just want to know what the kid’s abilities are going to be and what the limitations are.” • “They need validation, support to help their child to learn the language skills that they haven’t learned.” • “I feel parents need some information about the developmental process and some affirmation that what they’re doing is the kind of support the child needs, but it varies for every family.”

18. Parent-SLP Relationship - SLP Voices Realistic expectations, strong communication, individualized • “And just understanding what progress can look like, so there is realistic expectation in mind for parents; to establish an open line of communication and a really healthy relationship with parents.” • “I think early intervention can be really overwhelming for parents. It’s just the amount of expectation…and there is that care-giver burnout.” • “I they need reassurance that their child is in the right place doing the right things and making progress.” • “I think [they like] that someone is taking a very personal interest in their child and family and providing things for then to do at home with their child in mind, not just some sort of canned thing.”

19. Parent-SLP Relationship - SLP Voices Sincere and supportive relationships • “I work with a lot of nonverbal severe needs kids and I think a lot of what they appreciate is that you’re telling them they’re not crazy when [the child] is doing certain little things that are communicative, and you’re validating that for them, and that the kid just doesn’t exist, that there is really true intent here. When they hear a professional say it, it makes them feel like it’s worth it.” • I think they enjoy an adult that can talk back. I think that’s a big deal and that you have to be very supportive and very careful of their - very fragile – we’re all that way with our kids.”

20. #2 SLPs as Experts and Educators • SLP is expert on speech-language, but parent is expert on child --- two-way street • Provide information that parents need to assist their child • Take care to gauge the timing and amount of information • SLPs set goals and identify areas of potential growth

21. SLPs as Experts and Educators – Parent Voices Shared learning – watching, reading, dialogue • “I like that I can watch through the window because then I actually do home-based therapy with Erin. So it’s nice that I can see what Lindsay is working on and the way she cues and just everything.” • “The handouts gave us different ways to talk to him and to use different types of questions so we make an effort to do that throughout the day. We do conversation modeling in front of him.”

22. SLPs as Experts and Educators – Parent Voices • “One of the things I really like is I feel that even though I may not be in for that session, I still feel very involved in the process. I feel like I get lots of information, and I always talk with Katie afterwards and get feedback, and I know they‘re very clear about what they‘re working on and very, very, savvy in terms of giving me techniques and things to practice so I don‘t feel like I‘m out of the loop.”

23. SLPs as Experts and Educators - Parent Voices • “I think speech therapists are different people because you guys notice things and hear things that I don‘t notice and I don‘t hear. I don‘t know if it‘s cause I‘m a mother or what, but they catch things. I call speech therapists miracle workers.” • “You tend to hold your children back, because they‘re a blessing. You're not realizing, well, maybe they should be doing this. The therapists were able to teach us where Todd should be, what he was lacking, and what things we should expect him to do now and don't just kind of hold him and coddle him and protect him. So it was giving us a lot more direction and telling us where we needed to push Todd. I definitely don't think he would be anywhere close to where he is without their help.”

24. #3 SLPs Maintain Functionality for Children and Families Considering the child‘s interest during session planning is a small investment that may result in a significant generalization return. • Make suggestions for home practice fit in with daily routines. • Create individualized therapy goals and activities, but keep the big picture in mind.

25. SLPs Maintain Functionality for Children and Families – Parent Voices Intervention requires integration of family priorities • “It‘s kind of an eye-opener. ‘Okay, he can do this. He should do this. He knows how to do this.’ What, as a parent, can you do to facilitate this? Because it doesn't stop. If it stops when you leave the building, then you are not gaining anything from it, and I think that is what I get from my therapist.” • “My son has issues with food textures and so the therapist says, ‘Hey, bring in whatever you want him to eat and we‘ll work on it here,’ so I feel like the therapists really works on a very personal level with you and it‘s not just a cookie cutter therapy. They really make it what your child needs.”

26. SLPs Maintain Functionality for Children and Families – Parent Voices Fitting activities into daily events and routines • “We just messed around and we just played. He is very intelligent, so it was easy to create games on the spur of the moment wherever we were. We’d fit it in here and there. We didn’t really have a schedule of ‘we’re gonna go home and do this or that.”

27. SLPs Maintain Functionality for Children and Families – SLP Voices Providing parents with tools for successful carryover • “We get a lot of those social issues, you know. ‘Well, I took him to the store and he threw a fit cause it was time to go.’ We don’t know how to transition. Explaining to the parents how structure and routine and consistency are so important.” • “I think they should be part of the planning. They need to be part of the whole process. We work with kids on specific goals that are developmentally appropriate, but maybe there’s a bigger picture that the parents see that we don’t see.”

28. SLPs Maintain Functionality for Children and Families – SLP Voices Listen to identify what families need now. • “The diagnostic was scheduled for 2 hours. I stayed and visited with mom and dad and played with the child [4- years-old] and we talked and they were probably there for four hours. And at the end, Dad said to me, ‘All I want is to have a conversation with my son in the backyard as we play ball,’ but it took four hours and a lot of pain to get to that place.”

29. #4 SLP as Resource • SLPs Provide Out-of-Therapy Ideas and Homework • SLPs Generate New Ideas • Parents Want More Education and Resources from SLPs

30. SLP as Resource – Parent Voices Develop the partnership and guide parents • “Obviously they have much more knowledge than we will ever have about speech and what needs to be done and where my child should be. You’re not just having therapy for a kid, you’re having therapy for a parent. What do we need to do? This is where we want to go, this is what we want. What do we need?” “When we work at home, what I would like from Lindsay is to have lists of things that she‘s working on so I know what she‘s doing.”

31. SLP as Resource – Parent Voices Guidance • “They give us handouts of where to go to with some of the other therapies and what to do at home, so I think they really work hard at making a therapy program that is not just once a week. It‘s once a week here supported by everything you do at home that they help you achieve.” • “I really have to watch more intently to make sure I get these skills. So it would be great if there was something to teach me, the mother, that I could continue.”

32. SLP as Resource – Parent Voices Create and maintain resources • “It would be nice to have some central place to list these resources because a lot of the resources I find is through word of mouth or sitting in the room and people say, “He’s on his way to this, and I always go, Oh, what’s that?” • “I’d like to be part of some type of group for speech parents because the most that I’ve learned is from a friend of mine whose little boy has apraxia and asking her what have you seen work and what else should I try?”

33. SLP as Resource – Parent Voices Define the purpose of home activities – what, why, how. • “You don’t know things and they’re not always mentioned to you. The familiarity wasn’t explained to me. It was just like, ‘okay read this book again and work on the signs again,’ and I’m like ugh. So I wanted to move on, thinking that that was the goal, not realizing that the familiarity in the repetition was the goal. I think that could have been better explained to me.”

34. SLP as Resource – SLP Voices Parents appreciate resources and accessibility to therapist. • “They like things in writing. They love it when you give them something that says this is what I think you should do, or this is a resource to look at. I think the Internet has made great strides in bringing parents together with blogs and stuff.” • “After an evaluation I try to give them something in writing when they leave here, even though it is not a report. These are the things we thought were good. This is an area – just one area that I would work on. I almost always give the parent my card, so that if they go home and have questions they can call me back. I think it is really important that parents know that they can contact us.”

35. SLP as Resource – SLP Voices Power of motivation • “We have backpacks and some families will bring those home. There is a book in there and usually a little toy and game and maybe a set of cards that go with it. So kiddos will check those out. And I’ve heard parents use that as leverage all the time. ‘If you don’t do such-and-such you won’t get a backpack today,’ so it is pretty motivating for them to pick it out and take it home and play with it.” • “Parents want to know what to do. And they want stuff that is very specific and very concrete that they can be doing to feel like they’re being successful.”

36. #5 SLPs Refer, Recommend, Navigate • Advisor and entrance into systems of care • Communication – helping parent communicate within systems • Overcoming obstacles

37. SLPs Refer, Recommend, Navigate – Parent Voices Finding services • “What if we could kind of get him into a therapy that doesn't feel like therapy? And maybe he's going to be more willing to take that in, so, helping parents find the right places to go to help facilitate speech-language development or health, or help facilitate social development or whatever their needs may be.” • “I think one of the most frustrating parts about the process is how I felt like I had to go find all the information. You feel like you’re gonna miss something, that he should be involved in something else.”

38. SLPs Refer, Recommend, Navigate – Parent Voices Providing rationales for recommendations • “Originally I didn’t want a small group. I wanted it one-on-one but they really were able to educate me and say, you know, ‘Give it a try’ and made me feel comfortable with being able to say, you know, this really is very beneficial for him.” Helping providers and parents access information • “Access to information. I don’t know whether it comes through the pediatrician, day care providers, where we would find it. It definitely was word of mouth or calling or finding or talking to someone.” • “When we did get the call from the district, it was like, ‘Can you do Friday mornings?’ So if you can’t fit in those slots, I guess you would just not have it or get it somewhere else.”

39. SLPs Refer, Recommend, Navigate – Parent Voices Listening, validating, and acting on parent input • “The barrier we are feeling right now is our input at school, what works best for Samuel. They don’t really seem to listen. Like with integrating him into regular education or rewarding him for misbehaving. We’re his parents. We know what works best for him.” • Child Find did not fit with us. But we were able to find Sally and it did fit. So it’s navigating the system and figuring out what services are right for you, your family, your situati0n.”

40. SLPs Refer, Recommend, Navigate – SLP Voices Point of access to services • “I consider us to be navigators. Somebody to help because a lot of kids aren’t in tidy little speech and language boxes. And that’s why collaboration with OT, PT, psychology, and medical…will help you figure out where you’re going next.” • “Being an assessor it starts them on the road, whether it’s infant services, or if it’s toddler services, preschool services. We’re meeting the needs to determine eligibility and that starts the process. It’s the entryway.”

41. SLPs Refer, Recommend, Navigate – SLP Voices Setting the tone • “So I see parents a lot and you know the path is going to be long in terms of having needs and communication for quite a while. It’s kind of like we’re setting a tone for what the district will be providing them. Setting that path, being the first interface to set a good tone for this relationship that will be long-standing with district.” • “From my perspective, maybe more uniformity. I am getting the impression that models vary depending on how each district interprets what the processes are, so I think parents have a very difficult time navigating these processes.”

42. SLPs Refer, Recommend, Navigate – SLP Voices Tri role – educate, advocate, empower • “Sometimes I see the line kind of blur between being an educator and being an advocate for parents. If they’re not familiar with the educational system or how to navigate the medical system, then we can educate them but at the same also advocate for how they can really use and understand the system to get the best possible education and medical services for their child.”

43. #6 Factors Impeding Parent Participation • Impeding factors • Timely and appropriate referral • Access to information about who, when, where • Availability of services • Waiting lists for services • Amount of effort to find and coordinate services • Cost and inadequate insurance support • Time for therapy and homework

44. Factors Affecting Parent Participation – Parent Voices Mismatches – concern/referral; families/systems • “It took until he was two years and four months before we got a referral to [the agency]. And that was because I was so frustrated with him not being able to say anything. [The pediatrician said] ‘Oh, you know, it’s a developmental thing. He’ll get there.’ It’s been very frustrating not being able to move on when I know there’s something not right, you know. And I can see it, it’s just like nobody believing you and finally people believe you. ‘Oh I see what you mean.’” • “So then what does a parent do if you don’t know what the next step is? It’s not like there’s a manual out there going, Okay, here’s what’s out there available for you.”

45. Factors Affecting Parent Participation – Parent Voices Mismatches and Advocacy • “But I think that it has to be frustrating for a lot of parents because we’re talking about early intervention and if you have to wait six months, six months isn’t a big deal when you’re nine or ten. But when you’re four or five, that’s a huge amount of time that you could be helped and developed in better ways. And you’re not able to do that because you just have to sit and wait.” • “I think it really took an effort on your part because when we didn’t do anything, nothing happened. But when we started calling more frequently, it seemed to move a little quicker.”

46. Factors Affecting Parent Participation Family resources – Money and Time • “I think really awesome insurance would be helpful or a lot of money, because I would be giving him even more therapy if I could.” • “We’ve changed insurances several times so then, oh, it’s a pre-existing condition, or you get three visits, it just doesn’t cut it.” • “I kind of wish I had more time to practice more of it. But it’s hard having five, you know, ideally I’d like to practice every single day they’re not [in therapy], 15 minutes or so with each of the kids, but that’s really hard to do.”

47. Factors Affecting Parent Participation – Parent Voices Family resources - Schedules • “You almost want a coordinator to come on board. I’ll hire you and we can sit down and map through these cause you’re trying to navigate your own schedule and the schedules of your other children and then, make sure they get to therapies, and it’s overwhelming.”

48. Summary and Implications • Parents have much to tell us about their needs and their children’s needs. Take time to listen! • Parents want to be involved in early intervention. They look to SLPs to provide: • emotional support for themselves and supportive environment for their child, • guidance in navigating and accessing all services, • information about disorders and interventions, • direction in working with their child on goals

49. Summary and Implications • Converse with families to understand how much information they desire recognizing that this need changes over time. • Use rounding from the “grand rounds” concept, talk with parents about their experience and their needs. How is it going? What else do you need? Is there anything else that I can help you with? • Use half-sheets with bullets that can be agreed upon: What will work and how/when will it work for you? • Expect and acknowledge parent emotionality. These parents warrant sensitivity . SLPs need information and practice in how to respond to these situations.

50. Summary and Implications • Deliberately ask parents, through conversation, how they perceive your roles. This will indicate to a parent that you value family input and desire to make his or her practice family-centered. Repeat this dialogue throughout the intervention process because family perceptions, needs and questions can change over the course of their child’s developmental journey. • Help the family identify factors that impede their participation in intervention. Work with them to change as many factors as possible.