Spina Bifida Roles and Responsibilities

• Point Person for urological needs
• Provide collaborative consultation from prenatal diagnosis to transfer to adult urology
• Referrals and coordination for urological surgeries, video urodynamic testing, acute care medical or surgical inpatient follow up.
• Referrals to adult urologist 
• Knowledge transfer: expert and evidenced based care of neurogenic bladders for capacity building

• First point of contact for families
• Care coordination
• Triaging medical calls
• Wound care
• Follow up care/coordination (school and community)
• Follow up coordination with other specialists for needed care
• Liaison with school/community services for teaching/access/education
• Referrals/ Requisitions for testing/therapy/services
• Document requests by families (funding, insurance, etc.)
• Triage for new referrals
• Assist with access to funding for bowel/bladder supplies
• Order entry (referrals, testing)
• Address urgent requests from families (changes in function, UTI’s, pain, etc.)
• Education and teaching
  • Bowel and bladder
  • Catheters
  • Bowel training
  • Constipation
  • Skin

• Perform history (medical & developmental) & physical exam with clients from antenatal to 12 years old. 
• Identify medical & developmental diagnoses as necessary.
• Collaborate with Psychology on educational and neurodevelopmental testing results and recommendations.
• Order & follow up with diagnostic & laboratory tests as needed.
• Prescribe/recommend therapeutic/psychosocial interventions as necessary (ie: medication, physiotherapy, nursing care).
• Initiate, coordinate & follow up with referrals to specialists as needed. (ie: urology, orthopedics, neurosurgery)
• Provide education & counseling to patients & families in regards to spina bifida, developmental challenges and anticipated milestones as well as health promotion.
• Initiate discussions about transitioning and transfer of care with patients and families.
• Identify patients who may need additional support and resources in preparation for transitions.
• Communicate follow up visits and plans of care with family physicians.
• Make referrals as needed for psychology or social work.
• Primary consulting physician for Nurse Practitioner for all ages.

• Medically manage spina bifida health status of youth and young adults from age 14 – 25 years:
  • Perform medical history and physical exam
  • Perform adolescent health assessment 
  • Identify medical and developmental diagnosis within scope of practice
  • Consult as needed
  • Make internal referrals
• Collaborate with Psychology on psycho-educational assessments, results and recommendations.
• Provide education & counseling to youth & families in regards to spina bifida, adolescent challenges and anticipated milestones as well as health promotion in collaboration with ambulatory clinic nurse.
• Collaborate with youth, families, life skills coach, social worker, physician, physiotherapist & occupational therapist to develop a developmentally appropriate transition plan starting at age 14 or when developmentally appropriate.
• Encourage family to locate a primary care provider if followed by a pediatrician for primary care.
• Continually monitor and amend the transition plan as necessary.
• Inform primary care provider of the transition & transfer plan with updated copies of notes from NP.
• Initiate external referrals to adult specialists as needed.
• Link with community primary care providers & adult specialists to assist in the transfer of care.
• Coordinate transfer of care at age 19 years.
• Complete a transfer of care summary to be shared with patient, family and medical providers at time of transfer.
• Continue to follow youth as young adults at the Vibrant Healthcare Alliance, Community Health Centre and medically manage Spina Bifida health status as needed and continue to oversee transition until age 25 yrs.  Provide telephone support or virtual care through videoconference to young adults who are unable to attend the transition clinic due to distance.

• Performs musculoskeletal and mobility assessments for all clients in clinic setting 
• Through clinic assessments, identifies and refers clients to Spina Bifida/SCI Orthopaedic Surgery Clinic  
• Collaborates with orthopaedic surgeon, occupational therapist, orthotists and other members of SB/SCI team to develop appropriate care plan for musculoskeletal health and mobility 
• Communicates recommendations and care plan to internal and external providers, clients and families
• Provides Spina Bifida and SCI education to clients, families and community care providers 
• Provides appropriate PT interventions
• Provides transitional care and support related to musculoskeletal health and mobility 

• Assess and monitor fine motor and visual motor development, including development of printing skills and skills required for ADLs
• Assess school readiness (early academic skills, dressing, pre-printing, printing, cutting skills, etc.)
• Consult re: school accommodations for physical access, toileting, writing, etc.
• Prescribe/recommend equipment and assist with funding for that equipment including wheelchairs and seating (modular and custom moulded seating), bath/toileting equipment, etc.
• Provide wheelchair skills training
• Make recommendations regarding safer transportation (i.e. child passenger restraint system recommendations)
• Consult re: home renovations and accessibility – refer to local support where appropriate
• Consult re: vehicle modification – provide resources, support with funding
• Provide driving assessment resources
• Assess and provide intervention for ADLs including feeding, dressing, bathing, toileting, transfers
• Assess upper extremity function including strength and ROM, and provide recommendations regarding prevention of upper extremity overuse injuries
• Provide education re: prevention of pressure injuries/pressure mapping/pressure injury management

• Providing education on early speech and language development as requested by the team.
• Facilitating referrals for preschool speech and language assessment and intervention.
• Evaluating need for SLP assessment:
  • Facilitating referrals for assessment in the community (e.g. at school)
  • Completing as appropriate at Holland Bloorview
• Providing assessment/support for swallowing issues as requested by the team.
• Facilitating speech and swallowing referrals internally/externally.

• Psychosocial and brief counselling support with families, children/teen clients.
• Information, navigation and advocacy regarding government funding (funding for medical supplies),
  • community programs (ie. recreation, camps), other accessibility programs (parking permits, northern travel grants/accommodations) and various systems (housing, education, immigration, child welfare,  accessibility rights, non-governmental funding/charitable organizations, food security).
• Consultation with Interprofessional team and outside agencies/community supports
• Support Youth transitioning to Adult care services

• Assessing client’s life skill and recreation needs (adolescents)
• Referring internally or externally for life skill development, post secondary support and transition to adulthood supports
• Provides 1:1, group and overnight programming to foster independence and increase confidence in life skill and recreation areas (money, cooking, social, etc.)
• Individual and client centred goal setting to have direction and purpose behind all interventions
• Follow-up through Vibrant Healthcare Alliance SB Transition clinics

• Youth Facilitator’s are individuals with Lived Experience with Childhood-Onset disability, chronic illness and acquired injury who work as full members of the rehabilitation team. 
• Assist clients to meet their goals and desired outcomes using lived experience and clinical reasoning.

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