Respite Resources & Caregiver Posting

Respite Care Notebook

Developed with families, CNF created the Respite Care Notebook for families who now use respite care services or are thinking about it. The forms in this Notebook are fully-customizable… allowing you to bring information about your child and his/her needs into one place. Respite caregivers will use that information to provide the best care for your child.

NORD Offers Program Aimed at Providing Caregivers with Relief

This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder. NORD understands that caring for a loved one is a generous gift that demands significant amounts of time, attention, patience and dedication.

The Respite Program provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $500 annually for those who qualify.

What care may be covered?

  • Registered Nurse (RN)
  • Licensed Practical Nurse (LPN)
  • Certified Nursing Assistant (CNA)
  • Home Health Aide (HHA)
  • Non-professional caregiver

Who is eligible?

The caregiver must be a US citizen or permanent resident of the United States for at least six months with evidence of residency, and be willing to undergo a financial evaluation of need to determine if they fall within the program’s financial eligibility guidelines. Additionally, the patient for whom care is being provided must have a confirmed rare disease diagnosis.

How do you apply?

Awards are granted on a first come, first served basis to eligible individuals. There is no fee to apply. Contact a Patient Services Representative at 203.616.4328 or email


Respite Locator by State

Funded by the Administration for Community Living, US Department of Health and Human Services, State Lifespan Respite Programs or Projects are run by a designated state government lead agency, which works in collaboration with a state respite coalition and an Aging and Disability Resource Center Program/No Wrong Door System. Their purpose is to implement statewide systems of coordinated, community-based respite for family caregivers caring for individuals with special needs of all ages. Since 2009. thirty-seven states and the District of Columbia have received Lifespan Respite grants from ACL. Those states that currently have federal grants or have sustained Lifespan Respite grant activities initiated with earlier grants or are supported by state funding are identified below with state agency contact information. A list of all states granted awards since 2009 are listed in the right-hand menu. You may also want to contact the State Respite Coalition for additional information and respite resources.

Caregiver posting

Caregiver posting for child with dup15q syndrome