The Golden Thread: Movement and Mobility

1. The Golden Thread: Movement and Mobility Sheree York, PT, PCS: CHS Chantel Jones, PT, DPT: CHSEI Melissa White, PT, MS: UCP/Hand in Hand Betty Denton, PT: Tri-County Services

2. ObjectivesThe Participant will be able to: • Assist the family and team in identifying priorities using routines-based interviews • Assist the family and team in developing meaningful and measurable outcomes based on the priorities identified • Provide interventions that will support the family in helping their child develop movement/mobility • Coaching and teaching positioning and activities that can be carried out through routines • Identifying and helping access additional resources • Translating information from medical or clinical service providers for practical application at home • Collaborate with other team members to address child and family needs related to movement/mobility skills

3. Underlying Philosophy • World Health Organization: International Classification of Functioning, Disability and Health • OSEP TA Community on Practice: Mission and Key Principles • Family-centered Practice • Evidence-based Practice • Professional competencies, ethics and rules/regulations

4. ICF model Health condition Activities Participation Body Functions And Structures Environmental Factors Personal Factors

5. OSEP TA Communityof Practice Mission Part C Early Intervention builds upon and provides supports and resources to assist family members and caregivers to enhance children’s learning and development through everyday learning opportunities.

6. OSEPKey Principles • Infants and toddlers learn best through everyday experiences and interactions with familiar people in familiar contexts • All families, with the necessary supports and resources, can enhance their children’s learning and development • The primary role of a service provider in EI is to work with and support family members and caregivers in children’s lives • The EI process, from initial contacts through transition, must be dynamic and individualized to reflect the child’s and family members’ preferences, learning styles and cultural beliefs

7. OSEP Key Principles (cont’d) • IFSP outcomes must be functional and based on children’s and families’ needs and family-identified priorities • The family’s priorities, needs and interests are addressed most appropriately by a primary provider who represents and receives team and community support. • Intervention with young children and family members must be based on explicit principles, validated practices, best available research, and relevant laws and regulations.

8. Family-Centered Care Families and children are active participants in identifying functional outcomes, goals that reflect needs/desires of individual Services are provided within the natural environment of the child (Svien, 2006)

9. Family-Centered Functional Services WHERE: natural environments WHEN: routines and activities, convenience HOW OFTEN: based on family and child needs, potential for change, support needed for family to learn strategies for supporting development through daily routines and activities HOW: sharing information, modeling, coaching, identifying and communicating with other providers

10. Family Centered CarePatient Centered CareRelationship Based Care • Enhance parent confidence in roles (increase competence of child to be I with their own healthcare • Improve pt/family outcomes • Increase pt/family satisfaction • Build on child/family strengths • Increase employee satisfaction • Decrease healthcare costs • Lead to more effective use of healthcare resources (Spearing, 2008)

11. Family Centered CareRelationship Based Care • Respect each child/family • Honor ethnic, racial, cultural, socioeconomic diversity/effect on family experience and perception of care • Recommend, facilitate and support choice for child/ family • Ensure flexibility in org. policies, procedures, provider practice (tailor to each child/family, individualize) • Share honest, unbiased info, ongoing • Provide & ensure formal/informal support • Collaborate with families in care of each child • Empower each child/family to discover their own strengths, build confidence/make healthcare decisions (Spearing, 2008)

12. Evidence-Based Practice Parents and Therapists: • Natural environments as location and family activities and routines • Learning developmental skills • Being part of a community • Role of therapist as teacher: teaching families, adaptations, supporting and educating families • Collaboration: meeting families where they are,l encouraging and confidence building, collaboration among service providers Campbell 2009

13. Campbell (cont’d) Implications for practice: Parents seem to understand natural environments (better than therapists) as location and way of providing services where setting, activities, and routines becomes the context for practicing and learning new skills: a source of opportunities for learning and a context for gaining acceptance and making friends. Therapists seemed to limit this concept to location only, suggesting that the EI services do not vary whether delivered at home or in clinic. (?)

14. Perspectives of Therapist’s Role in Care Coordination between Medical and Early Intervention ServicesIdeishi 2010 OT, PT, and SLP practice frameworks include coordination, consultation, and collaboration as vital and integral aspects of effective practice • Therapists serve an important role in helping families and non-health based team members understand the medical and health status of a child • Communication across disciplines and settings is often difficult • Families are often confused by the different approaches of medical and EI providers • EI therapists can see how the care and recommendations from other providers affects the daily lives of families: Opportunity to support social and emotional needs • Degree of mistrust across settings: a better understanding of roles, expectations and challenges could improve care coordination • Confusion and frustration re: access to services and care coordination to meet the multiple needs of children and families

15. Ideishi 2010 Summary • Need for increased opportunities for teaming and collaboration • Commitment to family-centered care as common thread between providers • Promoting partnerships between families and service providers • Recognizing families as experts in their children’s care • Strengthening decision-making roles for families • Become more knowledgeable, skilled and effective in care coordination to provide families and children with more responsive, sensitive, and appropriate service • Participate in community services collaborative efforts • Participate within professional associations and government at all levels to promote regulations that support quality services

16. RBIFunctional, Meaningful Outcomes Where do you fit? • Assessment team • Interviewer • IFSP development • Intervention • Team collaboration • Family support and education

17. RBI: When? How? • Intake • IFSP • ongoing

18. Routines Based Interview • Helps identify what matters most to the family (concerns) • Helps us understand where and how the family lives (contexts and expectations) • Helps us understand what matters most to this family (priorities) • Helps us identify available and needed resources (eco-map) • Helps us focus on functional and meaningful outcomes • Helps us become more effective professionals

19. RBI  • Listening • Caring • Use of appropriate resources • Partnerships • Effective strategies • Accommodations as needed • Improved communication

20. Where do my knowledge and skills come in? • Assessment: delay or disorder? • Coaching/Teaching: routine activities that can be practiced on a regular/routine basis (motor learning) • Encouraging: family/caregiver competence, child strengths and abilities • Educating: diagnosis, services, prognosis (sharing information to guide expectations) • Identifying resources: equipment, clinics, non-EI services, community based activities • Sharing ideas from experience with other families • Practical, effective strategies

21. Outcomes • Family indicates they would like for their child to sit • Explore when, where, how, for what purpose • Ex: Suzy will sit while playing, eating, while family eats, without support 4 of 5 times each day for 3 weeks

22. Examples • Jay will roll or scoot across the floor to play with a toy 3 times a day, 5 days a week, for 3 weeks • Scott will walk around the furniture to reach a toy 5 times a day for 4 weeks • He will progress to pushing a toy or walking with hands or hips held across the room, 2 times a day for 3 weeks

23. Strategies for Supporting Development of Sitting Skills • Observation • Listening • Teaching • Positioning: boppy, lap, corner of couch, box/basket, other seats • Handling/facilitation: bounce, tilt, pull-to-sit • Side-propping, pushing to sit, tilt to catch self • Play while sitting

24. Strategies for Supporting Development ofFloor Mobility • Observation • Listening • Teaching • Facilitating rolling • Prone to supine: prone to reaching with weight shift • Supine to prone: reaching for toy • Across lap • Prone propping to pivoting and scooting: motivate with toy, assisted positioning and weight shift

25. Strategies for Supporting DevelopmentOf Standing Skills • Observation • Listening • Teaching • Stand with support at couch to reach for parent or toy • Stand with support against chest • Help practice sit to stand from sitting on parent’s leg or crossed ankles

26. Strategies for Supporting Development of Cruising and Walking • Observation • Listening • Teaching • Motivate to shift weight by placement of toy or parent • Assist with weight shift and stabilizing weight bearing side at couch or holding hips to dance • Help push rolling toy or box • Hold hands or hips • Hold broomstick or other end of sock or toy

27. Addressing Underlying Impairments • Observation/Evaluation: muscle tone, flexibility, posture • Listening: typical stiffness or inability to hold upright postures • Teaching: ways to facilitate increased stiffness/balance or reduce stiffness • Positioning and holding • Stretching during routine activities, after bath, etc • Handling in ways that provide opportunities to: • move or hold positions against gravity • Relax or stretch “tight” muscles • Refer to appropriate physician, clinic or outpatient therapist • Medications • Spasticity management • Orthotics • Outpatient therapy • Medical care to identify or address problems

28. EI Case Study Grace is a 6-month-old (corrected age) girl born at 24 weeks of gestation. At birth she weighed 1lb, 2oz. Due to bronchopulmonary dysplasia (BPD) and other upper respiratory complications, Grace spent the first 4 months of her life on a ventilator in the NICU. Additionally, she had a mild case of necrotizing enterocolitis (NEC).

29. More Background At 1-month-old corrected age (5-months chronological), Grace was discharged home with her family on 0.25 L of supplemental O2. When awake, her O2 levels are in the upper 80s. While asleep, they are in the upper 90s. Physically, Grace has slightly increased muscle tone in her shoulders and legs.

30. Grace’s Skills @ 6 months of Age Sleeps well through the night Good head control Smiles socially

31. Family Resources Both parents employed full-time Maternal grandmother provides childcare

32. Family’s Concerns When will my baby sit up? When will she crawl? How do we get her to gain more weight? She likes to play with toys when we hold them. How do we get her to play with her own toys?

33. RBI: Beyond Questions to What Matters During Daily Routines • Sit to play • Sit without falling over • Sit to eat eventually so she can feed herself • Eat more types and enough food to gain weight • Reach and play with toys so she’s happier by herself for short periods (so we don’t have to hold her all the time)

34. Functional Goals Grace will pull to sit from lying on her back after diaper changes and when waking from a nap. Grace will work with nutritionist and OT to address weight gain and other feeding concerns. Grace will play with her toys without adult assistance when lying on her side, her tummy, her back, and when sitting in her high chair.

35. Grace’s Skills @ 10 months of Age • Continued social smiling • Sits approximately 5 seconds without support • Scoots forward on tummy with support at her feet • Makes cooing/babbling sounds ___________________________________ Newly diagnosed with mild spasticity

36. Family’s Concerns How do we keep her from being so stiff? When will she crawl? When will she feed herself with her hands? When will she hold her own cup? When will she walk? Should her feet roll in at the ankles like this?

37. Functional Goals Grace will feed herself Cheerios. Grace will hold her own sippy cup. Grace will crawl forward on her belly to reach her toys. Grace will pull herself up to furniture to stand. Grace will be referred to MD & outpatient PT to address foot alignment. Family will demonstrate comfort and independence with stretching Grace to help decrease her stiffness.

38. EI Case Study 2 Gaines was born at term with hydrocephalus He had a VP shunt placed immediately He has “cortical blindness” and seizures Both parents work: mom is a nurse and has worked in special ed and hospitals He attends a home day care He has a 6 year old sister Church and work friends are supportive Extended family lives in Selma and New York Followed by Neurosurgeon and Ophthalmologist

39. Gaines at 2 months • Sleeps most of the time • Doesn’t respond to visual stimuli • Poor head control • Stiffness in legs and arms Family priorities and questions: Does he or will he see? Will he develop ok?

40. What would you ask? What would you do?

41. Video: Mareo

42. What If: • Family did not speak English? • Parents worked during day and day care did not want you to go there? • Parents are seeking multiple services. What is your role? • MD told mother baby won’t live long • Parents do not understand diagnosis • Parents do not follow-through • How do you develop functional and measurable goals for these “other” areas?

43. Are You Providing EI Services That: • Are family-centered? • Are developmentally appropriate? • Provide opportunities to practice and participate in activities during daily routines? • Occur in the natural environments where the family and child live, play, participate in activities meaningful to them? • Are collaborative with other providers? • Train/support families to care for their child in ways that support the development of their child while addressing their identified concerns?

44. References • World Health Organization. International Classification of Functioning, Disability, and Health. Geneva, Switzerland: World Health Organization;2001 • AAHBEI (American Association of Home-Based Early Interventionists) http://www.aahbei.org • Svien L, Anderson A, Long T. Research in Pediatric Physical Therapy: An Analysis of Trends in First Fifteen Years of Publication. Pediatr Phys Ther. 2006: 18: 126-132. • Spearing, E. Providing Family-Centered Care in Pediatric Physical Therapy. In:. Pediatric Physical Therapy, 4th ed.( Tecklin, J. Ed.). Baltimore, MD: Lippincott Williams & Wilkins: 2008: 1-11

45. Campbell P, Sawyer B, Muhlenhaupt M. The meaning of natural environments for parents and professionals. Infants & Young Children. 2009;22(4):264-278 • Ideishi R, O’Neil ME, Chiarello LA, Nixon-Cave K. Perspectives of therapist’s role in care coordination between medical and early intervention services. Phys & Occup Ther in Pediatrics. 2010;30(1): 28-42

46. Additional References • AEIS Policy Memos (found on the ADRS website) www.rehab.state.al.us • AEIS EI Updates disseminated from the state office • ADRS (Alabama Department of Rehabilitation Services) www.rehab.state.al.us • AAHBEI (American Association of Home-Based Early Interventionists) http://www.aahbei.org/ • NEC*TAC (National Early Childhood Technical Assistance Center) http://www.nectac.org/ • OTHER WEB RESOURCES: www.mychildwithoutlimits.org Resources from United Cerebral Palsy http://pediatrics.aappublications.org/cgi/reprint/104/1/124 Journal article on the role of the pediatrician in Early Intervention http://www.medicalhomeinfo.org/health/EI.html American Academy of Pediatrics web page on Early Intervention