IHSS Data Sharing Toolkit

New Data Sharing Helps Families Access the Services They Need (DDS Bridges Newsletter, April 2026)
Service coordinators can now view In-Home Supportive Services (IHSS) data from the Department of Social Services (DSS).  This helps them support you better and reduces the paperwork you have to do.

Fact Sheet on Privacy Protection
This Department fact sheet provides an overview of your legal rights to privacy. The law describes some situations in which your information may be disclosed. Please see the Notice of Privacy Practices for a complete list of how your information may be used and disclosed, and how you can access your information.

Payor of Last Resort

• WIC Section 4659(a): Explicitly mandates that regional centers “identify and pursue all possible sources of funding” before using their own funds. This includes governmental programs like Medi-Cal, Medicare, school districts, and Social Security.
• WIC Section 4648(a)(8): States that regional center funds shall not be used to supplant the budget of any agency that has a legal responsibility to serve the general public and receives public funds for those services.
• WIC Section 4659(c): Prohibits regional centers from purchasing services that could be obtained through private insurance or a health care service plan when the consumer or family meets the criteria for coverage.
• WIC Section 4659(d)(1): Specifically prohibits the purchase of medical or dental services for consumers aged three or older unless the regional center receives documentation of a denial from Medi-Cal, private insurance, or a health care plan.

Data Sharing

• HSC § 130290– Under the California Data Exchange Framework (created by Assembly Bill 133), certain health and social service providers are now required to share information in real-time to coordinate care for Medi-Cal members.
• Public Records Act (AB 1147): Beginning January 1, 2026, regional centers must disclose certain documents under the Public Records Act, though any personally identifiable information must be de-identified or redacted first.
• WIC Section 14184.102(j): Often cited in relation to the CalAIM initiative, this section works alongside the DxF to promote data sharing for Medi-Cal care coordination.
• Senate Bill (SB 660): This later legislation amended HSC § 130290 to expand the program, transition its administration to the Department of Health Care Access and Information (HCAI), and strengthen enforcement and accountability measures.

Confidentiality

• Health Insurance Portability and Accountability Act of 1996 (HIPAA): Establishes federal standards protecting sensitive health information from disclosure without patient’s consent. The US Department of Health and Human Services issued the HIPAA Privacy Rule to implement HIPAA requirements. The HIPAA Security Rule protects specific information cover the Privacy Rule.
• WIC Section 4514: This is the Lanterman Act’s specific confidentiality provision. It states that all information and records obtained in the course of providing services to people with intellectual and developmental disabilities are confidential.
• WIC Section 5328: A broader statute that applies the same confidentiality standards to records of individuals receiving mental health and other developmental services.

Slide 1: Title Slide
Title: Better Together: Coordinated Support Through Data Sharing
Subtitle: Improving Services for Individuals and Families in California

Slide 2: Why This Matters
Header: We Heard You
Content:

• Families want government programs to work together, not separately.
• California is responding by sharing data across departments.
• The goal: More coordinated, effective support for you and your family.

Slide 3: What’s Changing
Header: From Fragmented to Connected
Content:

• State departments are now working together.
• Your service coordinator can now access IHSS data.
• This helps reduce paperwork for you and improves planning.

Slide 4: Understanding the Law

Header: Using Other Services First
Content:

• By law, regional centers can fund services only after other options are used.
• Example: If you qualify for IHSS, you should use those services first.
• Regional centers step in when there are gaps.

Slide 5: Why IHSS Data Matters
Header: Smarter Planning, Less Paperwork
Content: Your planning team can now see what IHSS services you already receive.

This helps:

• Identify gaps
• Request more IHSS hours
• Find other supports if needed

Slide 6: What You Can Do
Header: Help Us Help You
Content:
Talk with your service coordinator.
Share what services you are getting, and how much of them.
Let them know what’s missing.
Together, we’ll build a better plan.

Slide 7: Your Privacy is Protected
Header: Your Information is Safe
Content:

• Data is protected under state and federal privacy laws.
• Used only to coordinate your services.
• Want to learn more? Check out our Privacy Fact Sheet.

Slide 8: Closing Message
Header: Working Together for Better Support
Content:

• This is about you—and making sure you get the help you need.
• Coordinated services mean better outcomes.
• Thank you for being part of this effort.

Opening: Why This Matters
“We’ve heard from many of you that government programs can feel disconnected—and that it’s hard to get the support you need when services don’t talk to each other. That’s changing. California is now sharing data across departments to better coordinate services for individuals and families. This means less duplication, less paperwork, and more support that actually works together.”

Understanding the Law and Regional Center Services
“By law, regional centers can only provide services after other available options have been used. That’s why it’s important to make the most of programs like In-Home Supportive Services, or IHSS. For example, if you qualify for IHSS, you should be getting as much help as possible—like personal assistance—through that program before the regional center can step in with additional support.”

Making It Easier for You
“We know navigating government programs can be frustrating. That’s why we’re making it easier. Your service coordinator now has access to IHSS data. This helps your planning team understand what services you already receive and where there might be gaps. It helps them advocate for more IHSS hours if needed—or identify other supports the regional center can provide.  And means there is less paperwork for you.”

Why This Helps You
“This isn’t just about rules—it is about making sure you get the most appropriate support possible. When your team knows what services you already have, they can help you get more of what you need, faster and with less paperwork.”

Protecting Your Privacy
“We take your privacy seriously. Any data shared is protected and handled securely, in full compliance with state and federal privacy laws. If you have questions about how your information is used, we have a privacy fact sheet that explains everything. Your trust matters to us.”

Closing: What You Can Do
“To make this work, we need your help. Please talk with your service coordinator and planning team. Share the services you are getting and how much of them, and let them know if something’s missing. Together, we can make sure you and your family get appropriate support.”