Live-In Caregiver FAQ

Building on the Basics

Resource Description: Responses to frequently asked questions about the Live-In Caregiver service.

Media Type:

Responses to common questions about the Live-In Caregiver service.

How do I find an agency who will support a Live-In Caregiver?

  • If you are working with a provider you trust, ask them to help you create the Live-In Caregiver role if they don’t support it already.
  • Ask other families for recommendations, and use social media to connect with parent or self-advocate groups interested in shared living.
  • Talk to your Care Manager, Self-Direction Broker, Fiscal Intermediary, Housing Navigator, or DDRO to see if they know an agency that supports Live-In Caregivers.
  • Contact the New York Housing Resource Center at in**@ny***.org to connect with other resources inside and outside of your region. When you reach out, let them know who you have already contacted.
  • If you work with a new agency, perform some due diligence. Visit a program, talk to staff, and talk to people they support and their families. Read their 990, which publicly reports financial and business activities. Use the IRS Tax Exempt Organization Search Tool (hyperlink to: https://apps.irs.gov/app/eos/) or search the agency’s website.

Can a Live-In Caregiver be anyone I choose?

  • You have freedom to choose a Live-In Caregiver. For example, you can choose:
    • A friend.
    • Someone you have known for a long time.
    • A former staff member.
  • However, OPWDD gives some requirements for the Live-In Caregiver.
  • The Live-In Caregiver:
    • Cannot be related by blood or marriage.
    • Must reside in the home of the person receiving their support.
    • Does not control the person’s resources and does not make decisions on their behalf.
    • Must clear agency-required background checks.

What should I consider when choosing a Live-In Caregiver?

  • This is a life-sharing process; you will get to know each other over time.
  • Look for a Live-In Caregiver willing to build a mutually beneficial relationship.
  • The Live-In Caregiver:
    • Adopts the vision/values of a Shared Living arrangement.
    • Is local and knowledgeable about the area.
    • Can physically support the person if necessary and in an emergency.
    • Is personable and trustworthy; you can only find this out by spending a lot of time with them.

What are some best practices for hiring a Live-In Caregiver?

  • A Live-In Caregiver is not the parent and should not be parental in their role.
  • Engage in Person-Centered Planning for the person and for the Live-In Caregiver. Consider:
    • Coordinating schedules and life activities.
    • Including the Circle of Support to assist with relationship building.
    • Planning for personal time, vacation, sick time, etc.
  • Provide education for everyone involved.
  • Make a plan for resolving conflicts.
  • Create an agreement between the people sharing their lives.
  • For technical information on the agency’s role and agreements, refer to the OPWDD ADM #2016-03 and the current “Self-Direction Guidance for Providers (hyperlink to: https://opwdd.ny.gov/system/files/documents/2022/03/sd_guidance-final_march2022.pdf).” If the agency does not have a template agreement for a Live-In Caregiver, check with your DDRO.

What obstacles might I encounter?

  • Some provider agencies may be unfamiliar with Live-In Caregiver services and requirements.
  • Some people may believe having a Live-In Caregiver is too risky.
  • Provider agencies may lack experience with wage and labor requirements.
  • People may lack knowledge about tax advantages for a Live-In Caregiver through IRS Section 131.
  • Explore the Shared Living Toolkit and other resources on NYHRC.org (hyperlink to homepage of new NYHRC website).