Oklahoma Statewide Autism Conference 2018 PARENT/CAREGIVER PARTICIPATION IN THERAPY IMPROVING OUTCOMES FOR CHILDREN AND THEIR FAMILIES INTRODUCTIONS Maria Jones, PT, PhD mjones1@okcu.edu Cynthia Barger-Fenton, MA, CCC-SLP cbfosu2@gmail.com Tai Allen, OTR/L taimtorbett@yahoo.com OBJECTIVES Understand the importance of parent participation in therapy Illustrate strategies used to foster parent participation Reflect on current practices and devise a plan for improving parent participation 1
Oklahoma Statewide Autism Conference 2018 PARENT PARTICIPATION WHAT IS IT? DEFINITION -TERMINOLOGY MATTERS Parent Involvement Parent participation/engagement Doing to Doing with Lead with mouth Lead with ears Telling parents what they should do Listening to parents and eliciting ideas and strategies from them One-way communication Two-way conversation Ownership remains with therapist/teacher/school Ownership is shared Focus on results in select or isolated Recognizes the need for efforts that situations/environments extend across multiple situations/environments Acknowledging the family as a Supporting the Encouraging constant in the child in family to family child’s life decision- and peer making support Supporting Promoting an child’s individual transition to approach adulthood Family- Centered Care Recognizing the importance Celebrating of community- successes based services Developing Honoring policies, cultural practices, and diversity and systems that Building on family are family- family traditions friendly and strengths family-centered www.theberylinstitute.org 2
Oklahoma Statewide Autism Conference 2018 Better Health Outcomes Parent Child and Family Participation/ Satisfaction Clinician and Staff Family- Satisfaction Centered Improved Allocation of Resources Care Family Capacity Building PARENT PARTICIPATION – WHY IMPORTANT? Honor the parent/family expertise Parents/families are central to the child’s life Parents/families have a unique set of values and relationships Parents/families are in the lead and have ownership Family life provides rich sources for child learning and development Improved outcomes when families participate in interventions Practice opportunities PRACTICE AND REPETITION ARE IMPORTANT!!! A typically developing child will have been exposed to oral language for approximately 4,380 waking hours by the time s/he begins speaking at ~18 months of age. If someone is using a different symbol set and only has exposure to it two times a week, for 20 – 30 minutes each, it will take 84 years for that person to have the same experience!!! Language competency occurs around 9 – 12 years of age after being immersed in and practicing oral language for ~36,500 waking hours. At twice a week, 20 – 30 minutes, it will 701 years for a person using an alternative system to have the same experience. Jane Korsten (2011) QIAT Listserv 4th April 3
Oklahoma Statewide Autism Conference 2018 PARENT PARTICIPATION WHAT DO VARIOUS PROFESSIONS SAY ABOUT IT? PARENT PARTICIPATION Oklahoma Parent Organizations American Occupational Therapy Association American Physical Therapy Association American Speech and Language Association Oklahoma State Department of Education Oklahoma SoonerStart Early Intervention Others? AMERICAN OCCUPATIONAL THERAPY ASSOCIATION (AOTA) AOTA’s Occupational Profile AOTA’s Code of Ethics AOTA’s Standards for Continuing Competency AOTA’s Standards of Practice for Occupational Therapy Professional Literature 4
Oklahoma Statewide Autism Conference 2018 AMERICAN PHYSICAL THERAPY ASSOCIATION (APTA) Guide to Physical Therapist Practice Code of Ethics of the APTA Standards of Conduct Academy of Pediatric Physical Therapy – Fact Sheets Providing Physical Therapy Under Parts B and C of the Individuals with Disabilities Education Act Professional Literature AMERICAN SPEECH-LANGUAGE-HEARING ASSOCIATION (ASHA) ASHA’s Preferred Practice Patterns Professional literature OK STATE DEPARTMENT OF EDUCATION – FAMILY AND COMMUNITY ENGAGEMENT Core Belief 1 Core Belief 2 Core Belief 3 Core Belief 4 All parents have All parents have the Parents and school The responsibility dreams for their capacity to support staff should be equal for building children and want their children’s partners. partnerships the best for them. learning. between school and home rests primarily with school staff, especially school leaders. 5
Oklahoma Statewide Autism Conference 2018 SOONERSTART EARLY INTERVENTION Mission What is SoonerStart? PARENT PARTICIPATION – WHEN? Evaluation of Plan Effectiveness Assessment development Intervention /Measuring /Goal Setting Outcomes HOW TO BEGIN THE CONVERSATION How do you feel about daily routines? T ell me about…. Child’s participation your dreams, hopes, and goals Satisfied a typical weekday What works? a typical weekend What doesn’t? special times your family has shared together Priorities family traditions and celebrations Avoid yes/no questions Family Interview Guide; Principles to Practice Indicators; Werner-DeGrace, 2004; 6
Oklahoma Statewide Autism Conference 2018 PARENT PARTICIPATION – HOW DO YOU IMPLEMENT? Strategies Obstacles and barriers PARENT PARTICIPATION – HOW? IMPLEMENTATION WHAT STRATEGIES DO YOU CURRENTLY USE? STRATEGIES B earss et al, 2015 7
Oklahoma Statewide Autism Conference 2018 PARENT PARTICIPATION- STRATEGIES Coaching Parent Training Led by professional with pre- Interaction style based on adult- established plan learning strategies Parent or teacher required to carry- Requires joint planning and reflection out activities with child How do you think this worked? Requires interpretation when therapist What might be some alternatives or not present what else did you try? Measured in terms of “compliance” (did Therapist observes and models they do it or not) Measured in terms of success PARENT PARTICIPATION- STRATEGIES Coaching interactions involve: Joint Planning Feedback Observation Reflection Action/Practice PARENT PARTICIPATION-STRATEGIES MEALTIME CHALLENGES: The EAT -UP ™ program (Easing Anxiety Together with Understanding and Perseverance) (Cosbey and Muldoon, 2018) Key Components: Each family given an individualized mealtime plan which included options for interventions Each family selected options most appropriate and comfortable for their family AND free to reject any option/intervention they did not feel was appropriate for their child or family. Individualized training given for each intervention strategy (including prompting techniques, behavior strategies, and a visual hierarchy that allowed the parent AND child to actually see the expected interactions. Duration: six months of intervention (twice weekly); actual number of sessions provided for each child ranged from 31 to 36 sessions. 8
Oklahoma Statewide Autism Conference 2018 PARENT PARTICIPATION-STRATEGIES PRAGMATIC LANGUAGE INTERVENTIONS Parsons et al. (2017) reviewed 22 studies (including 15 different interventions) on interventions for pragmatic issues for people with autism The studies reviewed: Included preschool-aged children with autism and elementary-aged children (ages 5-12) No studies reviewed focused on adolescents Durations of the interventions varied Findings: Location, modality and age did not influence results of the intervention. Interventions that included BOTH parents and child had a significant effect on pragmatic language abilities. Interventions that included parent training only (without the child present) had little to no effect. IMPLEMENTATION WHAT BARRIERS HAVE YOU ENCOUNTERED? BARRIERS REPORTED BY FAMILIES (COOPER-DUFFY & EAKER, 2017) Feeling the professionals do not listen Not understanding the jargon used by the therapists or other members of their child’s team Feeling that their children are talked about in terms of their deficits Parents report that the attitude coming from the “professionals” was “You can’t possibly know what you’re talking about.” Not recognizing the parents’ expertise concerning their child. Feeling like they are “token participants” in discussions about their child. Being presented with prewritten goals without consulting with the family first. Feeling blindsided by recommendations and goals presented to them. 9
Oklahoma Statewide Autism Conference 2018 PERCEIVED BARRIERS Families may appear uninterested or disengaged or families are “uncoachable” (Rush, 2018) Families may feel that the therapy session is the clinician’s “time” to work with their child. Feeling overwhelmed by the needs of their child Families may feel that they lack the specialized training to “get” their child to do what the clinician is able to do. A mismatch between expectations and priorities: the family doesn’t see the need to do or be a part of what the clinician does; the clinician’s priorities may not be compatible with the family’s priorities. PARENT PARTICIPATION – WHERE? EVALUATION THE EFFECTIVENESS? Ongoing All phases process Prioritized Measures Goals to Use 10
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