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Caregiver & Family Support

Long-term supports and services can be difficult to find.  Here is a list of some that can help:

Caregiver Education/support groups

Complex Care Center Caregiver Support and Education Series - this series of 1-hour sessions over lunch provide an opportunity for caregivers to share their experiences and learn useful techniques/strategies for addressing common and challenging situations. Free lunch and parking. Space is limited. Learn more on the CCC Events webpage.

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.  Complete this online, fill-able, referral form FLACI referral form or call toll-free 844-249-7126.

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.
      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.
  • 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.
    • Parent Support Group Phone: meets two Saturdays per month from 9:00am - 11:00am. Phone: (585) 347-1058
    • Sib Shop: meets two Saturdays per month, 9:00am - 11:00am. Phone: (585) 347-1058.

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 Laura Robinson by email or at 585-276-7906 to add your services to this list, make changes or suggestions.