Medically complex pediatric patients





  • Grand-Aides USA is working with the Children’s Hospital Association to carry out a pilot for the care of medically complex children (using the standard definition) -- in anticipation for the ACE Kids legislation passing, which mandates a move to capitated care. Grand-Aides are ideal for this challenge.
  • Grand-Aides are nurse extenders (either CNA, MA or community health workers) who are supervised closely by nurse care managers. They visit the home 3 times in the first week after discharge from the hospital to be sure the parents/child/adult with CHD are in a routine with post-op management and they are doing all that is necessary, and managing the stress. They complete yes/no questionnaires developed by the nurse and then (HIPAA compliant) get the data to the nurse; then the nurse goes live on video with the patient/family for 3-4 minutes every day the Grand-Aide is there can, for example, watch the infant during feeding). The usual is that the number of visits decreases over the first month, but does not have to -- depending on the needs. The supervisor decides this along with the family and Grand-aide. Goals for the program are improved health indices in the presence of reduced unnecessary admissions, reduced readmissions, reduced ED visits and reduced cost of care. Please see the Health Affairs article with a 58% reduction in heart failure readmissions in adults at UVA; we have been asked by the Cleveland Clinic and Aetna to help care for their 300 sickest adults with heart disease. In the first 3 months and 90 patients, we have had no admissions or readmissions for heart disease.
  • A relatively small number of children’s hospitals will be involved in the pilot. While not required, having a health plan as a major payer is helpful – as all reductions in unnecessary care fall to the bottom line of the plan.
  • The pilot is for “medically complex children,” but a single specialty such as pediatric heart disease can be considered as long as the patient meets the standard diagnosis of “medically complex,” such as those with single ventricle, inter-stage Norwood's (to allow them to go home), severe heart failure (before transplant and then continue post-transplant).
  • For these children and their families, we have extended the duties of the Grand-Aides to include more social work and navigation of the health system; the Complex Care Medical Home Grand-Aide.