Oklahoma Statewide Autism Conference 2018 PARENT/CAREGIVER - - PDF document
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
IMPROVING OUTCOMES FOR CHILDREN AND THEIR FAMILIES
Maria Jones, PT, PhD
mjones1@okcu.edu
Cynthia Barger-Fenton, MA, CCC-SLP
cbfosu2@gmail.com
Tai Allen, OTR/L
taimtorbett@yahoo.com
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
WHAT IS IT?
Doing to Lead with mouth Telling parents what they should do One-way communication Ownership remains with therapist/teacher/school Focus on results in select or isolated situations/environments
Parent participation/engagement
Doing with Lead with ears Listening to parents and eliciting ideas and strategies from them Two-way conversation Ownership is shared Recognizes the need for efforts that extend across multiple situations/environments
Acknowledging the family as a constant in the child’s life Encouraging family to family and peer support Promoting an individual approach Recognizing the importance
based services Honoring cultural diversity and family traditions Building on family strengths Developing policies, practices, and systems that are family- friendly and family-centered Celebrating successes Supporting child’s transition to adulthood Supporting the child in decision- making www.theberylinstitute.org
Better Health Outcomes Child and Family Satisfaction Clinician and Staff Satisfaction Improved Allocation of Resources Family Capacity Building
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
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
WHAT DO VARIOUS PROFESSIONS SAY ABOUT IT?
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?
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
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
ASHA’s Preferred Practice Patterns Professional literature
Core Belief 1 All parents have dreams for their children and want the best for them. Core Belief 2 All parents have the capacity to support their children’s learning. Core Belief 3 Parents and school staff should be equal partners. Core Belief 4 The responsibility for building partnerships between school and home rests primarily with school staff, especially school leaders.
Mission What is SoonerStart?
Evaluation of Effectiveness /Measuring Outcomes Intervention Plan development /Goal Setting Assessment
T ell me about…. your dreams, hopes, and goals a typical weekday a typical weekend special times your family has shared together family traditions and celebrations How do you feel about daily routines? Child’s participation Satisfied What works? What doesn’t? Priorities Avoid yes/no questions
Family Interview Guide; Principles to Practice Indicators; Werner-DeGrace, 2004;
Strategies Obstacles and barriers
Bearss et al, 2015
Led by professional with pre- established plan Parent or teacher required to carry-
Requires interpretation when therapist not present Measured in terms of “compliance” (did they do it or not)
Interaction style based on adult- learning strategies Requires joint planning and reflection How do you think this worked? What might be some alternatives or what else did you try? Therapist observes and models Measured in terms of success
Joint Planning Observation Action/Practice Reflection Feedback
MEALTIME CHALLENGES: The EAT
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
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.
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.
WHAT BARRIERS HAVE YOU ENCOUNTERED?
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.
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.
Ongoing process All phases Prioritized Goals Measures to Use
Positive outcomes from carefully structured parental training and
coaching along with parental implemented strategies.
Improvements in parents stress, self-efficacy, and skill acquisition of the
child with as little as 8-18 hours of training or coaching.
Dunn, Cox, Foster, Mische-Lawson, & Tanquary, 2012 Miller-Kuhaneck, Watling, 2018
The strategies discussed don’t work with ALL families The families I work with are uninterested or disengaged You are trying to make parents be the therapist I work in a clinic/school/etc, so this won’t work in my setting I have to use standardized testing as an outcome measure Families need a break or have so much on their plates that the