Collaborative Framework for Early Intervention Services: Redefining Natural Environments

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1 Collaborative Framework for Early Intervention Services: Redefining Natural Environments Karyn Lewis Searcy, M.A. CCC- slp Deanna Hughes, Ph.D. CCC- slp CSHA March 28, 2014

2 Disclaimer Financial: Author of How to Do Early Interven4on for Speech & Language: Empowering Parents (Plural Publishing, 2011). Karyn is eligible to receive royal4es. Deanna has no financial disclosures. Nonfinancial: Karyn is a co- inves4gator for the BRIDGE Collabora4ve, which has received funding through NIMH and Au4sm Speaks. Karyn does not personally receive compensa4on for my work on this project. Karyn also co- authored a chapter in Transla4onal SLP/A: Essays in Honor of Dr. Sadanand Singh Robert Goldfarb, Editor. Deanna has no financial disclosures.

3 What We Know Ø 1 out of 7 children in the United States are diagnosed with developmental disabilities (2011, CDC) Ø As of Thursday s report, CDC reports 1 out of 68 children are diagnosed with autism spectrum disorder Ø Early intervention leads to improved outcomes and lower long term costs Ø As identification of developmental disabilities increases, communities struggle to implement appropriate, effective programs Ø On local and national levels there is a call for capacity building in providing treatment for children

4 IDEA- Part C (birth- 3) * Minimum Components Ø At- risk infant or toddler: child under 3 at risk of delay if EI services are not provided Ø Developmental delay: defined by each state Ø Early intervention services: developmental programs provided under public supervision Ø Funding: provided at no cost, except where Federal or State law provides for a system of family payment Ø Treatment: identified by individualized family service plan team in one or more area, including speech & language

5 Current Policy in EI ü natural environments first appeared in 1989 in regulations for the Education of the Handicapped Act Amendments of 1986 ü 25 years later, participating professionals and families are still trying to understand and implement the regulation of natural environments ü many researchers are reframing concept to reflect philosophy of treatment, NOT location of treatment

6 ü Some states strictly interpret natural environments regulation of Part C ü Some states are less orthodox, and encourage early intervention programs and providers to focus on providing naturalistic learning opportunities Stewart, 2006

7 What is the Evidence in Early Intervention? Ø Best practices in early childhood education suggests that babies learn best from naturalistic learning opportunities (Dunst, Hamby, Trivette, Raab, and Bruder, 2000) Ø Providing intervention services in integrated settings and embedding strategies into everyday, family routines has become best practice in the field of early intervention

8 Ø Children make greater gains in some areas in center- based programs (Maring, 2006; Worchester, et al., 2013) Ø Parents implement effective strategies with higher success when working with experienced and supportive therapists (Stahmer & Gist, 2001; Wood, et al., 2004) Ø Parent education programs are an essential part of an evidence- base program for children with developmental disabilities (National Standards Project, 2009) Ø The cost of providing ONLY in- home services is high, and reduces access to highly trained, educated and closely supervised providers needed to provide effective parent education programs Ø Some parent prefer center- based programs for a variety of reasons (Stahmer, et al., 2011)

9 Ø Need to understand children s skill development and outcomes in center- based vs. in- home programs: ü Effect of individualizing services based on child and family characteristics/needs ü Identify which services are best provided in each setting Ø Measure the economic efficiency of providing center- based programs Ø Understand cultural and socioeconomic effects of in- home services ü Offering only in- home services can reduce access ü Family preference needs to be factored in

10 Review ASHA EI Guidelines there are few areas of early intervention practice in which clear, unequivocal answers emerge from empirical research that can be applied confidently to broad classes of infants and toddlers with disabilities (ASHA Ad Hoc 2008)

11 Differentially Defining Home- Based and Center- Based Home- Based Therapy Center- Based Therapy

12 ASHA s Four Guiding Principles

13 Principle 1 Family-Centered & Culturally Responsive incorporate family beliefs, values, principles, & practices that support and strengthen their capacity to enhance the child's development and learning because families provide a lifelong context for a child's development and growth

14 Principle 2 Developmentally supportive; Promote child's participation in natural environment Environments that offer realistic and authentic learning experiences (i.e., are ecologically valid) and promote successful communication with caregivers

15 Principle 3 Comprehensive, Coordinated, and Team- Based Service providers are responsible for selecting the most appropriate team model for each infant/ toddler and the family Team models differ in the nature of communication, contribution, and collaboration involved in the interaction among team members.

16 Principle 4 Best internal and external evidence Integration of highest quality and most recent research, informed professional judgment and expertise, and family preferences and values. Internal evidence: variety of sources including policy, informed clinical opinion, values and perspectives of both professionals and consumers, and professional consensus. External evidence: based on empirical research published in peer- reviewed journals. 13

17 Highest quality internal and external evidence available Provider- Based Critical Elements Evidence- Based Critical Elements Family- Based Critical Elements Areas of Agreement Effective Individualized Community Interventions Stahmer & Searcy, 2011

18 Review Evidence Base for Speech & Language in EI

19 ASHA s Evidence- Based Systematic Review (EBSR) Service Delivery Models for Children Birth to 5 Schooling, Venediktov, & Leech (National Center for Evidence- Based Practice in Communication Disorders, 2010 ) Ø Research was inadequate and too compromised by qualitative and methodological limitations Ø Results offer little direction to SLPs seeking to understand the implications of service delivery on treatment outcomes Ø Service delivery factors did not appear to have significant effect on speech and language outcomes Ø SLPs must evaluate the effects of the intervention they provide AND the framework in which it is delivered

20 Ø Even when therapy is moved to in- home, the philosophy of implementation often reflects clinic- based thinking Ø Bags of toys, equipment, and planned activities/routines reflect a physical movement Ø Still lacks integration of communication outcomes functional to the children s everyday activities/routines with their caregivers

21 The IFSP team should not feel compelled to provide an undue burden of justification, as this would violate the spirit of the requirement that the IFSP be based on the individual needs of the child (Sec )." (Houston & Bradham, 2008)

22 (Houston & Bradham, 2008) Ø Natural environments is often defined as services being delivered in the child's home Ø With this strict interpretation, families may not be provided adequate information about the range of community services available Ø Just as least restrictive environment options are reviewed at IEP, so should similar options be offered by IFSP team Ø Don t allow setting drive service delivery; must be based on family's long- term goals

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24 Ø Qualitative interviews were conducted with both parents and providers of EI services Ø Questions targeted interviewees perceptions of home vs. center- based services across a variety of topics (e.g. parent engagement, collaboration with other providers) Ø Providers represented different fields and had differing levels of experience (e.g. junior to senior)

25 Ø Collaboration with other professionals Ø Level of parent engagement Ø Administrative functions (scheduling/cancellations) Ø Sense of isolation from clinicians and parents Ø Amount of progress the child made Ø Supervision and continuing clinician development Ø Controlling Resources: The toy dilemma Ø Parent to Parent and Peer to Peer Ø Lack of continuity between the evaluation, treatment, and transition Ø Level of service seemed to be arbitrary or dictated by resources

26 Ø Other providers/administration often not aware of family s personal challenges/life situation Ø Provider viewed as a babysitter Ø Parents and clinicians may feel like the home is being invaded Ø Disjointed services such as the Magic of the 3rd birthday Ø Distractions Ø Parents did not feel they were made aware of all of their choices Ø Valuable routines can be found across settings (e.g. waiting room)

27 Hybrid SLP Program Intensive Parent Child Therapist Paraprofessional Center- Based 2 times per week Parent Child Paraprofessional Home- based 2 times per week

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29 Intervention Format Parent implemented coaching Parent support/group Trains all caregivers Includes siblings Parents x x x x Providers x x

30 Intervention Content- 1 Parents Providers Fits with a variety of disciplines and philosophies x x Comprehensive x x Play- based and Rela@onship- based x x Easy for Families Intui@ve x x Structured x

31 Intervention Content- 2 Parents Providers Uses natural environment Family focused and individualized Proac@ve, engaging, and fun Provides clear goals x x x x x x x Clinical data collec@on for effec@veness with child x x

32 Community Fit Parents Providers Flexible format for agencies/family needs x x Cost/Fundable Experienced provider Ability to build capacity within own agency Experien@al training and support for providers Evidence- based x x x x x x x x

33 Ø Families may have limited ability to get around, and feel isolated from community supports (Dunn et al., 2001) Ø Families may find it difficult to have professionals in their home, and lack resources to implement strategies (Bailey et al., 2004) Ø IFSP development process can be overwhelming for families, and are unprepared to participate in the goal- setting process (Bailey et al., 2004) Ø Home environment is a natural setting, but not children s only natural environment (Wong et al, 2007)

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35 é caregiver- child Caregiver Coaching Interven>ons é caregiver- professional é Child social skills Suppor>ng and Empowering Caregivers Brookman- Frazee & Searcy, 2013

36 Why Focus on Caregiver Impact of Focus in everyday seings BeKer and maintenance of child skills Target child skills that occur in family daily Increase and maintenance of skills Increases family Decreases parent stress and depression Equips parents to teach new skills Increases parent s feelings of op@mism for their child Provides increased hours of interven@on Frequency of s@mula@on yields greater outcomes

37 Using consultation and coaching models that integrate adult learning will support evidence- based child communication interventions and enhance the original commitment to implementation of family- centered practices Schooling, Venediktov, & Leech, 2010

38 How to Reach Caregivers Empowering Parents

39 I can t take any off work She s too young We can t afford the gas My mother says The doctor I was a fussy says I worry baby, too too much He s just a late talker How can SHE help my baby? People keep looking at me and my screaming baby! What am I doing wrong? I I don t know how to play with my baby!

40 Pike s Laws of Adult Learning Learning is enhanced by directly involving adults in the process Adult experience should be acknowledged Adults understand their own data Knowles Strategies Agree on learning priorities and roles Join in rather than take over Provide specific and meaningful feedback to enhance competence Application to Therapy set functional goals that reflect family priorities that will result in clear, relevant, and jointly established expectations clarify the role of the parent as intervention provider directly help parent physically interact and engage child discuss parenting experiences they have already encountered find ways to join and expand current p-c interactions experientially problem-solve with the parent during familiar routines and activities lead parents to design activities with their child help parents observe and measure subtle progress adults prefer one concept at a time, and learn best by direct application to relevant problems "More isn't better if parent can't remember how or when embed intervention in daily routines remind parent that change will take time

41 Pike s Laws of Adult Learning Learning is related to fun; humor promotes strong learning experiences Opportunities to successfully practice new skills increases direct application Knowles Strategies The relationship does matter Build on the caregiver's strengths Application to Therapy don t expect parents to take risks early in the process help parents maintain humor and joy in interaction confidence and motivation will grow from success, improved child skills and positive experiences with you success will increase parent s repetition of the activity parents use new information more quickly easily when it s integrated into what has worked in the past maintaining current routines facilitates ease of learning incorporating limited modifications or additional opportunities is easier within a familiar framework

42 Understanding caregiver perspectives

43 ABA Therapy Developmental Assessment

44 Response Hope Reinvestment Loss

45 Frequent Challenges & Solutions Applicable to all Settings

46 Frequent Challenges & Solutions Ø Poor Parent Compliance & Attendance Ø Culture & Language of Family Ø Parent Cognitive Limitations Ø Parent Mental Health Issues

47 Ø Parent is uncomfortable with strategies ü Involve parent in designing plan ü Reframe intervention strategies Ø e.g., Reinforcement vs. Bribery Ø Parent is overcommitted/overwhelmed ü Start small ü Help parent understand the bigger picture and small steps ü Work through hard times with parent ü Help parent identify times when support is available ü Home visits ü Reschedule when parent has more time

48 Poor Attendance Ø Logistical Issues ü Provide child care ü Offer flexible scheduling ü Conduct training in home or community location Ø Low Motivation ü Rapport- building strategies ü Low cost dinner to parent groups conducted in evening ü Incentives for attendance and progress in program ü Have parent pay refundable deposit to register

49 Cultural Issues Ø Interventions are derived from observations of Westernized, middle class, Caucasian parenting practices Ø Differences in parenting practices exist across cultural groups Ø Lots of variability within cultural group

50 Clinic Can Simulate Home Individual Treatment Programs

51 Sample EI Programs

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53 Selecting An Evidence- Based Coaching Intervention Choosing Method of Capacity Building Literature and Review of Community Input and Choice / Pilot Study & Training Methods Stahmer & Searcy, 2011

54 Project ImPACT Ø Brooke Ingersoll, Ph.D. & Anna Dvortcsak, M.S., CCC: Project ImPACT (Improving Parents as Communication Teachers) Ø Teaches families naturalistic, developmental and behavioral intervention techniques to increase their child s social and communication skills Ø Interactive teaching strategies drawn from a variety of evidence- based interventions shown effective for young children with autism and other developmental disorders Ø SoCalBRIDGE Collaborative adapting for use with children under age 24 months

55 Blended Philosophies Ø Developmental Techniques (Interactive) ü Increase engagement ü Increase initiations Ø Behavioral Techniques (Direct Teaching) ü Teach specific skills

56 Trying to Make Sense of it All Searcy Searcy, & Hughes, CSHA

57 Challenges with Coaching Caregivers Ø Providers trained primarily to work with children may not feel confident in Coach role with adults Ø Caregivers learn at different rates Ø Caregivers demonstrate varying levels of engagement and receptivity Ø Caregiver stress Ø And many more!

58 Some Prerequisite Skills for Caregiver Coaching procedures Mastery of procedures Understanding conceptual basis of core Teaching parents to do the Responsive style goal seing Fluency in & feedback Managing the parent coaching process (Kaiser& Hancock, 2003) Adapt to parent & child needs Teach of Have strategies for parent- child progress

59 Coaching Caregivers Active Teaching Strategies (Brookman- Frazee & Drahota, 2010) Ø Describe skill/activity Ø Model the skill/activity (Don t look too good!) Ø Have caregiver practice skill/activity in session Ø Provide immediate and specific feedback on caregiver practice Ø Review between- session practice Ø Summarize what caregiver learned and check for understanding

60 Adapted Project Impact, 2011

61 What Can it Look Like?

62 Ø Prior to demonstration, ask parents to watch for use of specific techniques and their effect on child s behavior Ø Demonstrate techniques with child Ø Ask parents what they observed Ø If parents have difficulty, ask increasingly close- ended questions

63 Ø Increase amount of time parent implements techniques Ø Decrease amount of feedback and support Ø Provide opportunities for parent to practice techniques across activities ü Have them bring toys, activities or items from home if possible Ø Discuss applications of the techniques to other settings and activities

64 BRIDGE Technique Cards

65 Sample Manual Page

66 NOT HOMEWORK!! Ø Review times & activities parents can practice this week Ø Have parent reflect on how it felt to use the techniques with their children (or why they didn t) by asking specific questions about strategies ü were you able to set- up a communication temptation with him at home? ü were you able to move his favorite toy out of his reach?" Ø Listen to what they found rewarding and what they found difficult about the strategies and interaction Ø Discuss positive points as well as challenges Ø Respond to almost everything the parent does (at least 1 comment per minute) Ø Give feedback on only a limited number of techniques per session

67 Empowering Parents in Group Process PARENT- CHILD SIGN & SPEAK

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69 Establishing Individual Goals

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71 General Guidelines for Naturalistic EI Summing it All Up

72 Ø Be competent & confident when working with the child Ø Don t make it look like you are better than the parent Ø Tell the parent things they are doing right Ø Acknowledge the parent s feelings of frustration/guilt/ sadness Ø Remain professional Ø Avoid alliances, and structure interactions between parents

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74 1. Restricting intervention to in home excludes parent choice 2. Community- based (e.g., daycare) excludes parent from process 3. Services in center- based sites can increase number and type of professional collaboration 4. Home- based service is less efficient than center- based in terms of number of families served 5. Mandated level/amount of services does not always meet the needs of the child (e.g. does better with a half hour vs. hour) 6. Center- based allows for better control of variables in clinical environment which can lead to increased focus on parent/child 7. Clinicians report sense of isolation and lack of support in their clinical decision- making in home- based services 8. Parents often have fewer distractions in center- based programs 9. Junior clinicians report fewer hours of direct supervision in home- based 10. Parent to parent and peer to peer opportunities available in center- based services (Englestad, K. 2014)

75 Ø The natural environment policy has led to decreased access to comprehensive early intervention services due to the interpretation that they all must take place in the home environment Ø Often overlooked, however, is that services provided in center- based programs can increase access to: ü ü ü ü qualified professionals group programs supporting social development higher quality of parent support collaboration between disciplines

76 Ø Policy changes are minimal and feasible: ü will not increase costs ü will increase access to care Ø Current services would NOT need to be limited; new service options (likely at a lower cost) would become available Ø Guidelines would need to remain in place to ensure in- home services are still available to families when recommended or desired

77 Ø Clarification of the natural environment policy to focus on naturalistic techniques that directly unite babies and parents, and simulate individual family life in a controlled environment Ø Encourage specific parent coaching and social skills development programs that can be accessed through center- based programs, which will increase quality and access, and ensure fidelity across agencies

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