The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
666 Broadway, 8th Floor
New York New York 10012
800-221-4602
info@ndss.org 

Coordination of Care

Coordination of care is a person-centered and shared decision-making process to identify and provide needed care, services and support. For people with Down syndrome, the need for support is a lifelong process that evolves, transitions and changes based upon multiple factors. A proactive and comprehensive approach, grounded in collaboration, continuous communication and teamwork is necessary for effective and accountable coordination of care. 

While coordination of care is an overall ongoing process, there are times when coordination focuses on specific and periodic care needs. For example, when a person is taken to an emergency department (ED) or hospitalized, that ‘transition’ for admission to the ED or hospital and for the return home requires communication, collaboration and coordination among family, caregivers, health care providers and others to understand the care and support needed for the person with Down syndrome. 

In person-centered care, coordination should be planned by a team of individuals that includes the person with Down syndrome (“the center person”). Team members may vary over time depending on the support and services needed. Team members may include, but are not limited to: parent(s) and other family members; staff and caregivers from the group home, day program, or other support services; primary care physician and other physician specialists; nurses; dentist; psychologist or behavior specialist; social worker; nutritionist; physical therapist or occupational therapist; speech pathologist; resource coordinator or case manager; community support services staff; hospice care provider or others as applicable. 

During any care coordination meeting, medical care visit, hospitalization or other similar situation, someone must initiate and lead the care planning with the team. This “team leader” may identify key participants; ask for input from other team members; initiate discussion about strengths and challenges; facilitate development and collaboration for a plan and goals that are understood by all. Frequently, a team leader may be a caregiver coordinator, family member, group home manager or registered nurse, case manager or resource coordinator. The team leader may change depending on the care coordination situation. 

For example, if the center person is being discharged from the hospital, the hospital case manager might be the team leader to get family member(s), group home staff representative and day program representative together to be sure discharge instructions and follow-up care are understood. Or, if the center person is having difficulty eating solid foods at home, and must transition to a pureed diet and thickened liquids, the team leader may be a dietitian who meets with a speech pathologist, representative(s) from the family caregivers and day program staff to help caregivers learn about food preparation, feeding techniques and food and drink aspiration precautions.

The following graphic depicts the process in coodination of care. Team members, including the individual with Down syndrome (the center person), communicate collaborate and coordinate to identify the center person's strengths and challenges; plan and set goals; initiate the action plan; and evaluate or reassess progress in meeting needs and goals. 

Be mindful to:

  • Share relevant information about the center person, such as observations, signs, symptoms, medications, etc.
  • Discuss care needs that impact hospitalization stays such as history of wandering, food preferences, unstable walking, verbal skills, etc.
  • Clearly understand follow-up care needs and treatments and share with others that are not part of team member discussions.

Person-Centered Care

Communication, Collaboration and Coordination

Coordination of care encompasses a comprehensive approach to provide the right care for the right reason, by the right people at the right time, for the person aging with Down syndrome. As described in this guidebook, there are many aspects about health, medical conditions and living arrangements that must be considered throughout a person’s lifespan. Keep in mind that the frequency of coordination of care meetings and discussions, along with team member participation, varies depending on the needs of the center person. Discussions may be held annually, monthly or more frequently, or at the time of an acute or sudden change in behavior, hospitalization or change in living arrangements.

When identifying and evaluating strengths and challenges, the following table outlines various domains of the center person’s abilities, capabilities, challenges, environment, preferences and resources that can be considered when providing comprehensive care planning and coordination.

Topics to Consider in Care Coordination

In addition, when developing a plan, the following elements can be useful when considering a specific challenge or goal:

  • Strengths / Opportunities
  • Problems / Challenges
  • Goals / Outcomes
  • Person(s) Responsible
  • Education Required
  • Timeline / Goal Date(s)
  • Evaluation
  • Next Steps

Coordination, collaboration and communication (the 3C’s) throughout the lifespan of a person with Down syndrome are the core components of person-centered care. Sharing information, observations and best practices; keeping the center person involved; learning from each other; and ensuring continuity and consistency in the plan of care illustrate the 3C’s in action.


EXTERNAL RESOURCES

BOOKS

  • End of Life Care: Bridging Disability and Aging with Person Centered Care. Ed. Bill Gaventa and David Coulter. Binghamton, NY: Haworth Press. (2005)
  • Buddy Walk
  • NDSS Yourway
  • My Great Story