Resources for Caregivers

What is Respite?

Respite is planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult.

Caregiver Intensity Index by ARCHANGELS - For Working Caregivers, to assess the intensity of their experience and connect to resources

All NYSCRC videos, webinars and additional resources are accessible on the NYSCRC YouTube page.

VIRTUAL RESOURCE CENTER - Resources for Caregivers

Resources for Caregivers of Loved Ones with Developmental Disabilities

New Release - The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illness - September 2021

The National Alliance for Caregiving is proud to present The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses, a new resource designed in partnership with Global Genes and with support by Mallinckrodt Pharmaceuticals to provide caregivers with the support, services and specialized information they need to care for a child with a rare and/or serious illness. This guidebook offers an extensive list of resources to help a caregiver in any situation throughout the entirety of their journey as a rare disease caregiver, compiled by those in the rare disease space and caregivers themselves. This list is supplemented by the specialized information needed in order to care for a child with a rare and/or serious illness. If you or someone you know cares for a child living with a rare and/or serious illness, make sure to check out the guidebook at the link below.

You’ll learn about

  • The process of getting an accurate diagnosis for a rare and/or serious illness;

  • Genetic testing, clinical trials and support groups that can help;

  • Information on treatment and care coordination with specialized teams;

  • Understanding the cost of care and treatment;

  • Advocating for your child, their care and in their disease space;

  • Empowering your child to manage their rare and/or serious illness through all aspects of their life, including when they become an adult; and

  • Caring for yourself and your family.

There is also an appendix with a comprehensive list of online resources, supports and services for caregivers, the child living with the rare and/or serious illness, and his or her family that are referenced throughout the guidebook. Download the Guidebook

Advanced Care Planning

Dr, Patricia Bomba, VP and Medical Director, Geriatrics at Excellus speaks to end of life care planning and palliative care. Compassion and Support is an interactive website that helps families to have conversations about advanced care planning and understanding options for people from the age 18 to those near the end of life. www.compassionandsupport.org

Family Caregiving AARP Videos

What is a “Prepare to Care Guide”? AARP helps people ease into the caregiving journey in five basic steps

Learn How to Advocate for Your Loved Ones - Presbyterian Senior Services

Technology for Caregivers - Presbyterian Senior Services

Click here For a full list of webinars from PSS - This is a valuable resource for information on taking care of yourself and your loved one.

Helpful Caregiving Websites

Help for Cancer Caregivers

Caring for Rare Diseases Caregivers

Caregiver Action Network

Generations United      

Medicaid Long Term Care

Community Health Access to Addiction and Mental Healthcare Project (CHAMP)

Helpful Caregiving Apps (free)

AARP Caregiving - The app allows users to monitor symptoms, coordinate care with other family or caregivers, and keep track of appointments and medications. It also features a help center, where caregivers can find answers to urgent or commonly asked questions. AARP Caregiving is available for free on iPhone

Carezone - Dubbed a "health info organizer," CareZone helps caregivers keep track of medical information by organizing medication, allergies, insurance cards and ID cards all in one place. Through the app, caregivers can also create to-do lists to keep track of appointments and medication times. The app also curates news relevant to your loved one's illness, disability or condition. All features are private and secure, according to the company, meaning sensitive information stays private. Carezone is available for free for iPhone or Google Play

CaringBridge - Communication is critical when dividing caregiving duties among multiple people — and that's where CaringBridge can help. CaringBridge connects several caregivers through one app, allowing several people to keep track of appointments, changes in health and other essential information. Users can also send each other inspiring messages and motivation through the app, which really helps pull together a team of caregivers in the toughest moments. CaringBridge is available for free on iPhone or Android.

Symple - Symple is an easy way to keep track of your loved one's symptoms like anxiety, fatigue and pain over long periods of time. The app allows you to track up to 10 individual symptoms, recording how your loved one feels and documenting any possible contributing factors to mood or health shifts. Symple features an interactive graph and spreadsheet that a caregiver can use independently, or send to a doctor for evaluation. Users say the app is simple to use, making it easy to remember sometimes vital health information in between office visits. he app is available for free on iPhone.




NY Connects is a trusted resource for anyone who needs information and assistance with linking to long term services and supports. NY Connects can help you understand your care options, find services, learn about supports in caregiving, get answers about health insurance options, and more.

1-800-342-9871
www.nyconnects.ny.gov

Access to Self Directed and Medicaid Managed Long Term Care can provide significant relief for caregivers. 

Below is comprehensive list of resources in New York.

New York Expanded In-Home Services for the Elderly (EISEP)

  • Populations served: Adults (60+) who need help with everyday activities to take care of themselves, want to remain at home, and are not eligible for Medicaid

  • Self-directing participant count: 735

  • Program Website

Mainstream Medicaid Managed Care (MMMC)

  • Populations served: Persons with mental Illness

Consumer Directed Personal Assistance (CDPA) Program- Available under MMMC and MLTC

  • Populations served: Adults with physical disabilities

  • Self-directing participant count: 20,000

  • Program Website

NYS OPWDD Comprehensive Renewal Waiver

  • Populations served: Adults with intellectual/developmental disabilities

  • Self-directing participant count: 10,000

  • Program Website

Support Needs of People with I/DD and Co-Occurring Mental Health Challenges and their Families

The Arc has recently released a 2018 brief on the support needs of people with I/DD and co-occurring mental health challenges and their families. Up to 40% of individuals with I/DD experience co-occurring mental illness, with some estimates pointing to even higher prevalence rates. Despite its large presence in the community, little is known about how to support families, caregivers, and direct service providers in meeting the needs of individuals experiencing mental illness and I/DD. Read the Brief Here.

Families and Schizophrenia: Earlier Engagement. Bigger Benefits (webinar)- Caregiver Action Network

Caregivers, mental health professionals, and leading advocates discuss the importance of early diagnosis and intervention. Participants include representatives from Mental Health America, the National Council for Behavioral Health, and The Mindstorm and features resources that include ChoicesInRecovery.com and Blueprint for Families of Loved Ones with Mental Health Issues.

The Juggling Act of Caregiving: Balancing Career, Health, and Gender Roles

Sarah B. Barnes, Wilson Center, March 2019

This report offers some hope for the future of caregiving. Currently 2/3 of unpaid caregivers are women. More supportive policies and millennials' gender equity in caregiving are easing the stress on women. With continued steps to increase the societal value of caregiving, it can become a more positive experience that benefits all involved.

Caregiving
Blogs

Care Community from Caregiver Action Network - Share and talk with other caregivers

Alzheimer's Reading Room - Reports on new Alzheimer's research and documents the author's personal experience with caregiving.

Caregiving with Purpose - Award-winning blog written by Dr. Ina Gilmore about fictional character Lisa's jorney through the stages of caregiving.

Caregiving.com Blogs - Family caregivers' personal blogs that cover a variety of topics; it includes the blog of caregiving expert Denise Brown.

The Caregiver's Voice - Written by caregiving expert Brenda Avadian, this blog brings humor and inspiration to caregiving topics.

The Unprepared Caregiver - Written by former caregiver Dr. Azchary White, this honest and informative blog discusses the challenges of caregiving and ways to cope.

What's Hot in PD? - Monthly blog by National Parkinson's Foundation Director Dr. Michael Okun with the latest Parkinson's news and research

Caregiving
Social
Networks

Elder Abuse
and
Financial
Exploitation