Transition of care Footnote 1
Since the 2010 guidelines, the importance of proper transition planning has been recognised
- Transition planning should begin in early childhood with input from the patient
- A social worker or care coordinator should be responsible overall for transition planning
Factors to consider for a young adult with DMD
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Relationships
- Develop skills to connect with others to manage own affairs (e.g. social outings and appointments)
- Work towards desired autonomy and independence
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Housing
- Examine where to live (family home vs elsewhere)
- Modify home for accessibility and safety
- Use assistive technology
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Transport
- Foster independent driving with vehicle modifications
- Modify family-owned vehicle
- Investigate accessible public transport options
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Health care
- Transition from paediatric to adult care
- Move from family-centred to patient-centred provider interactions
- Discuss age-related changes in healthcare benefits
- Assess the need for durable power of attorney for healthcare
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Daily living
- Explore funding and benefits
- Learn to hire and train personal care attendants
- Ensure respite for caregivers
- Consider need for guardianship/deputyship
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Education or employment
- Plan early for future vocation
- Consider classes online vs in person
- Contact campus programmes for students with disabilities
- Enlist employment of vocational planning resources