Children with Severe / Profound Challenges Margo Prim Haynes PT, DPT, MA, PCS Mary Rose Franjoine PT, DPT, MS, PCS

Overview Clinical Diagnostic Categories NDTA Enablement Model: Functional Integrity/ Impairments, Ineffective and Effective Posture and Movement, Activities and Activities Limitation, Participation and Participation limitation Treatment

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NDT Enablement Classification Model of Health and Disability Dimension Functional Domain Disability Domain A. Body structure & functions Structural & functional integrity Impairments A. Primary B. Secondary B. Motor functions Effective posture & movement Ineffective posture & movement C. Individual functions Functional activities Functional activity limitations D. Social functions Participation Participation restriction + Domains - Dimensions From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82

Clinical Diagnostic Criteria Medical Diagnosis: IQ ranges: –Severe : 40 – 25 –Profound: Less than 25 Educational Abilities: –Self Contained Classrooms: Trainable Motor Abilities:

NDT Enablement Classification Model of Health and DisabilityDimension Functional Domain Disability Domain A. Body structure & functions Structural & functional integrity Impairments A. Primary B. Secondary B. Motor functions Effective posture & movement Ineffective posture & movement C. Individual functions Functional activities Functional activity limitations D. Social functions Participation Participation restriction + Domains - Dimensions From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82

Disability Domains (Categories) Severe / Profound Motor Problems & Mild / Typical Cognitive Difficulties Severe / Profound Motor Problems & Severe / Profound Cognitive Limitations Fair Motor Difficulties & Severe / Profound Cognitive Limitations

Children with Severe / Profound Motor and/or Mental Functional Activities / Limitations and Participation / Restrictions

2009M R Franjoine & M P Haynes9 NDT Enablement Classification Model of Health and Disability Dimension Functional Domain Disability Domain A. Body structure & functions Structural & functional integrity Impairments A. Primary B. Secondary B. Motor functions Effective posture & movement Ineffective posture & movement C. Individual functions Functional activities Functional activity limitations D. Social functions Participation Participation restriction + Domains - Dimensions From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82

Body Structure & Body Function Global Damage –Unknown prenatal condition –Asphyxia –Prematurity Intracranial bleeds, infection, medical conditions

Cognition Challenges Cries: may be only means of communication Motivation: (Self- /Regulation) ??? Behavior: Self abusive or destructive Bonding difficulty: poor facial expression & lack of eye contact Startle Response: Difficulty adjusting to the world around them

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Neuromuscular System Impaired Muscle Activation Co-activation from excessive to moderate Impaired muscle synergies: Stereotyped patterns of movement Latency in initiating, sustaining and terminating postural muscle activity

Neuromuscular System Impairment of Timing and Sequencing: Insufficient Force Generation (muscle strength): Postural and Movement Muscles

Sensory System Somatosensory Issues: Proprioception / Tactile Information Vestibular Visual Issues: Auditory Issues:

Musculoskeletal System High Risk for… Contractures Hip subluxations /dislocations Shoulder dislocations Scoliosis / excessive lordosis Bone Growth Impaired

Cardiopulmonary / Respiratory System Cardiovascular Disease (Decoufle) Cardiorespiratory endurance

Other Systems Gastrointestional (GI) System Integumentary System

2009M R Franjoine & M P Haynes19 NDT Enablement Classification Model of Health and Disability Dimension Functional Domain Disability Domain A. Body structure & functions Structural & functional integrity Impairments A. Primary B. Secondary B. Motor functions Effective posture & movement Ineffective posture & movement C. Individual functions Functional activities Functional activity limitations D. Social functions Participation Participation restriction + Domains - Dimensions From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82

Posture and Movement General Characteristics: Posture Postural tone = varies from high to medium Asymmetry = poor midline orientation Alignment: UE= may remain in high-low guard position Alignment: LE = may see" windswept” legs

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Posture and Movement General Movement Characteristics Movement options limited Which comes first: lack of motivation or unsuccessful attempts to move ???

Feeding Challenges Feeding Difficulty –P & M: –Impairment Nutrition –P & M: Physical Traits of Malnutrition –Impairment: Blood chemistry Aspiration –P & M: –Impairment: Pneumonia

2009M R Franjoine & M P Haynes24 NDT Enablement Classification Model of Health and Disability Dimension Functional Domain Disability Domain A. Body structure & functions Structural & functional integrity Impairments A. Primary B. Secondary B. Motor functions Effective posture & movement Ineffective posture & movement C. Individual functions Functional activities Functional activity limitations D. Social functions Participation Participation restriction + Domains - Dimensions From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82

Activities & Activities Limitation Locomotor Skills Non Ambulatory Communicates Limited Communication usually Non Verbal Basic ADL’s Totally dependent on caregivers for all ADLs

2009M R Franjoine & M P Haynes26 NDT Enablement Classification Model of Health and Disability Dimension Functional Domain Disability Domain A. Body structure & functions Structural & functional integrity Impairments A. Primary B. Secondary B. Motor functions Effective posture & movement Ineffective posture & movement C. Individual functions Functional activities Functional activity limitations D. Social functions Participation Participation restriction + Domains - Dimensions From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82

Participation & Participation Limitations Participation: Equipment supports children out in community with caregivers Participation Limitations: Difficult for families to get children out of the home Problem intensifies as Caregivers Age Finances

Treatment ThinkFunction Equipment Critical for Child and Family –Seating Systems –Standers Essential for Child’s Health and Well Being Prevention of Secondary Impairments

Treatment: Pros Positively Influences Quality of Life: –Hygiene and Ease of Care by Caregivers –Respiratory function –Cardiac function –Caregiver and Child Bonding / Interactions –Childs Personality –Comfort of Child and Play Options

Treatment: Pros Decreases medical complications: –Illness –Contractures –Pressure areas

Treatment Concerns Therapist perspective: Behavior: Cries, Motivation: Progress Slow: Feedback: Difficult to Read Frequent Illness: Frequent Missed Appointments Medical Issues:

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Medical Issues Team Approach Critical Nutritional Needs Seizure Medications Spasticity Management Surgical Issues Pain Management

Bibliography Caulton JM. A randomised controlled trial of standing programme on bone mineral density in non-ambulant children with cerebral palsy. Arch Dis Child. 2004;89: Decoufle P and Autry A. Increased mortality in children and adolescents with developmental disabilities. Paediatric and Perinatal Epidermiology.2002;16: Gajdosik, CG, Cicirello N. Secondary Conditions of the Musculoskeletal System in Adolescents and Adults with Cerebral Palsy. Physical & Occupational Therapy in Pediatrics. 2001;21(4):49-68

Bibliography Gudjonsdottir B, Mercer VS. Effects of a dynamic versus a static prone stander on bone mineral density and behavior in four children with severe cerebral palsy. PEDIATR PHYS THER. 2002;14: Henderson RC. Bone density and metabolism in children and adolescents with moderate to severe cerebral palsy. Pediatrics. 2002;110:e5. Hadden, KL. Pain in children with cerebral palsy: common triggers and expressive behaviors. Pain Sep;99(1-2):281-8.

Bibliography Krakovsky et al. Functional changes in children, adolescents, and young adults with cerebral palsy. Res Dev Disabil. Jun 10, 2006; Persson-Bunke, M. Windswept hip deformity in children with cerebral palsy. J Pediatric Orthopedic, Part B Sep;15(5): Pin TW. Effectiveness of static weight-bearing exercises in children with cerebral palsy. PEDIATR PHYS THER. 2007;19:62-73.

Bibliography Schwartz, Lauren; Engel, Joyce M. and Mark P. Jensen MP. Pain in persons with cerebral palsy. Archives of Physical Medicine and Rehabilitation. Oct 1999; 80:10 ( ). Ward K. Low magnitude mechanical loading is osteogenic in children with disabling conditions. Journal of Bone and Mineral Research. 2004;19:

Children with Severe / Profound Challenges Adapted from Margo Prim Haynes, PT, DPT, MA, PCS Pam Cannon PT