CompassionNet for Children

A program for Rochester area families with children facing a potential life limiting condition.

When a child is seriously ill, little else matters. That is why we created a program that surrounds children and families with every kind of support they need when they need it.

Who We Are

CompassionNet recognizes the stress that is placed on the whole family when a child is diagnosed with a life threatening illness. CompassionNet works through dedicated case managers to help families navigate through the health care system.

We have two goals: 1) to minimize suffering associated with the child's disease, and 2) to help the family cope effectively with the child's illness and treatment.

The case managers focus on the family's needs/goals and promote quality of life. They can connect families with services that may include counseling, respite care, day care, and they are authorized to arrange insurance coverage of support services or items that fall outside traditional health care benefits.

Our compassion is boundless. Our net is a network of people dedicated to helping families care for their sick children; it is also a safety net, to assure every form of support is available to anyone who needs it.

Eligibility Criteria

A child must meet ONE of the following:

  • Diagnosis of a potentially life threatening illness (a list of some of these diagnoses is available)
  • Two unplanned hospitalizations over the last six months (not due to asthma)
  • An acute exacerbation of a chronic illness that places the child at extreme risk
  • A prognosis of three years or less

The child must also:

  • Be currently enrolled through our Rochester Region (any plan)
  • Be 21 years of age or younger

There are NO additional charges associated with this program.

We Offer:

  • Coordination among providers
  • Advocacy
  • Links to community resources
  • Emotional support for child, parents, siblings and significant others
  • Problem-solving and assistance for:
    • Transportation
    • Prescription costs
    • Co-pay costs
    • Family dynamics
    • Child care
    • Respite care
    • Home care

How Can My Family Get Involved?

Referrals are generated by the child's pediatrician, specialist or nurse practitioner (Call (585) 214-1333 for a referral). The CompassionNet Case Manager arranges a meeting with all pertinent parties after determining the child's eligibility. If parents learn that one of their children has a life-threatening illness, CompassionNet will:

  • Be available from the time of diagnosis
  • Support the family during its most stressful time and alleviate unnecessary suffering
  • Look at the needs of the whole family
  • Move quickly through the maze of service providers
  • Provide a link to community resources
  • Expand the family's coverage at no additional expense

Community Partners

  • AIDS Rochester
  • Camp Good Days and Special Times
  • Children's Hospital at Strong
  • CURE Childhood Cancer
  • Lifetime Care - previously known as Genesee Region Home Care (GRHC)
  • Kids Adjusting Through Support
  • Melissa's Living Legacy Foundation
  • Monroe County Developmentally Disabled Service Office Ronald McDonald House
  • SKIP of NY
  • Visiting Nurse Service of Rochester/Monroe County

For Additional Information

For more information about this program, call (585) 214-1333 or fax (585) 214-1207. Our nurses will respond to you, by telephone or mail, within 5 business days. If you need a more immediate response, please call us by telephone.

Brought to you by Excellus BlueCross BlueShield, Rochester Region, administered by Lifetime Care - previously known as Genesee Region Home Care (GRHC).

CompassionNet logo

Excellus BlueCross BlueShield is an HMO plan and PPO plan with a Medicare contract. Enrollment in Excellus BlueCross BlueShield depends on contract renewal. Submit a complaint about your Medicare plan at or learn about filing a complaint by contacting the Medicare Ombudsman. Y0028_9775_C.

This page last updated 10-01-2023.


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