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Strategies to Organize Care

Interdisciplinary Team

Health care for people with DD is team‐based care, with patients and caregivers at the center of the team. The first task is to assess who is on the patient’s team. Team members may include caregivers, authorized representatives, case coordinators, program administrators, social service providers and other specialists. Some special medical services and resources can only be accessed through the educational or social service systems. A clinician may identify the need to add additional team members. For example, a health insurance case coordinator can facilitate authorizations. Also, a behaviorist or an Intellectual and Developmental Disability (IDD) Nurse can make direct observations in the home or community.

Supporting Caregivers

About half of adults with DD live with family caregivers. The rest receive support from professional caregivers. All caregivers require support. Their needs should be assessed regularly. When making recommendations, the logistical challenges of implementing them should be discussed. If additional services and supports are required, specific recommendations should be forwarded to the Regional Center or another appropriate agency. Reports with detailed assessments and recommendations help patients negotiate for the services and supports they need.

Accommodations

Caring for people with DD takes time, patience, flexibility and creativity. Strategies include:

  • Allowing your patient to come back if they are too anxious (de‐sensitization visits)
  • Developing a routine so that patients and caregivers know what to expectv
  • Having caregivers practice activities that will happen in a clinician’s office
  • Holding a pre and/or post visit phone conference
  • Increasing physical accessibility of the office
  • Providing easy access to a contact person within the office
  • Providing sensitivity training for office support staffv
  • Requesting a health advocate to support the patient’s participation
  • Scheduling more frequent visits and/or longer appointment times
  • Using nurses, caregivers, or advocates to gather history and make observations
  • Using visit forms to help patients prepare and to communicate recommendations
  • Visiting the home, school, day program or work
Reference

For a sample Interdisciplinary Team Chart see: http://odpc.ucsf.edu/odpc/html/for_educators/practice_pearls.htm

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