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Complex Care Center

URMC / Complex Care Center / Community Resources / Caregiver & Family Support

 

Caregiver & Family Support

Long-term supports and services can be difficult to find.  Here are some that can help.

Respite Options

David’s Refuge provides a place of respite free of charge for parents and guardians who care for children with special needs or life threatening medical conditions, allowing them the much needed time to rest, reflect and recharge from the stress of full-time caregiving.

Finger Lakes Alzheimer's Caregiver Institute

Lifespan's Finger Lakes Alzheimer's Caregiver Institute provides free support to caregivers in a 10-county region.  Supports include an initial consultation to determine how Lifespan can help as well as education, health care coordination, respite, future planning and social activities.

NY Connects

NY Connects is a trusted place that gives you information about available options for long-term supports and services whether you are paying for services yourself, through insurance, or are eligible for a government program.  Contact NY Connects by phone at 1-800-342-9871 or visit: www.nyconnects.ny.gov

Local, State, and National Groups

  • Parent to Parent of New York State (http://parenttoparentnys.org/) is a statewide not for profit organization established to support and connect families of individuals with special needs. The 13 offices, located throughout NYS, are staffed by Regional Coordinators, who are parents or close relatives of individuals with special needs.
    • Finger Lakes Region Phone: (585) 424-7211
    • Parent Matching Program: offers parents the opportunity to be matched, based on their request, with a trained Support Parent. Support Parents are parents/caregivers who volunteer to help other families in situations similar to those they have faced, usually by telephone. parenttoparentnys.org/support/parent-matching
  • is a statewide not for profit organization established to support and connect families of individuals with special needs. The 13 offices, located throughout NYS, are staffed by Regional Coordinators, who are parents or close relatives of individuals with special needs. - See more at: http://parenttoparentnys.org/site/about/#sthash.VbAqtbID.dpuf
  • builds a supportive network of families to reduce isolation and empower those who care for people with developmental disabilities or special healthcare needs to navigate and influence service systems and make informed decisions. See more at: http://parenttoparentnys.org/#sthash.maS6ttzg.dpuf
  • Brain Injury Association of New York State (BIANYS) is a statewide non-profit membership organization that advocates on behalf of individuals with brain injuries and their families.
    • Phone: (518) 459-7911
  • CDS Monarch (http://www.cdsmonarch.org/family-support-groups) provides people with intellectual and developmental disabilities, and their families, the support and opportunities needed to build fulfilling and independent lives as active members of our community.
  • The Crisis Nursery of Greater Rochester – the only program of its kind in the Greater Rochester region – delivers free, temporary childcare during family emergencies, including (but not limited to): medical emergencies, unexpected illness, accidents, unemployment, mental health episodes, unexpected death, domestic violence, homelessness, legal issues, unstable/unsafe housing. https://www.centerforyouth.net/crisis-nurseries/

Guardianship

  • Future Care Planning Services - a non-profit entity providing comprehensive life care planning that promotes peace of mind for caregivers and their loved ones with disabilities by offering choices in key areas including financial, medical, legal, residential and other important services. Call: 585-402-7840, or visit: http://www.futurecareplanning.org/

Toolkits

  • Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children - The report provides a comprehensive review of the barriers and facilitators people with diverse disabilities—including intellectual and developmental, psychiatric, sensory, and physical disabilities—experience when exercising their fundamental right to create and maintain families, as well as persistent, systemic, and pervasive discrimination against parents with disabilities. http://www.ncd.gov/publications/2012/Sep272012

Contact Stacey Smith @ StaceyL_Smith@urmc.rochester.edu or call (585) 276-7932 to add your services to this list, make changes or suggestions.