Home and Community-Based Services (HCBS)

Barriers to HCBS waivers reduce access to services needed to live in the community.

There are currently unnecessary and unlawful barriers to accessing the Home and Community-Based Services for the Developmentally Disabled (HCBS-DD) Waiver. This issue has become particularly acute given the massive HCBA waiver waitlist and the inability of medically fragile children to access Medi-Cal services without institutional deeming, as well as the need for nursing and other services for individuals who have recently aged out of Early and Periodic Screening, Diagnostic & Treatment (EPSDT).

The waiting list for the Home and Community-Based Alternatives Waiver traps medically fragile children in hospitals and institutions.

California is a leader in the nation in Medicaid (known as Medi-Cal in California) expansion; however, the failure to ensure capacity for the Home and Community-Based Alternatives (HCBA) Waiver keeps children in hospitals and pediatric subacute facilities, when this waiver is their only pathway to Medi-Cal. Increasing HCBA Waiver capacity will also ensure that people with disabilities and older adults who need services from the program, including those with Alzheimer’s and dementia, can live in their own homes and communities.

Further, the rates for the HCBA waiver have not increased in 15 years. The Centers for Medicare and Medicaid Services (CMS) requires states to evaluate and update their rates at least every 5 years, but that has not happened in California. The lack of updated rates further reduces access to services by contributing to difficulty in recruiting and retaining an adequate workforce. The workforce shortage jeopardizes the health and well-being of children and adults with disabilities and threatens to undo decades of success and progress in the disability movement.

The California Community Transitions Program remains temporary.

The California Community Transitions (CCT) program is part of the federal demonstration project, the Money Follows the Person Program.  Established in 2007, CCT made funding available to help low-income people with disabilities and older adults transition from skilled nursing facilities (SNFs) back into their own homes. Rates for CCT have been flat since the program started in 2007, meaning that there have been no adjustments to rates in 16 years to account for inflation and increases in labor costs. Meanwhile, the Medi-Cal reimbursement rates for skilled nursing facilities have increased by nearly 70% during that same time, even though these facilities have failed to meet the needs of disabled residents, especially those with vision or hearing loss. In fact, skilled nursing facilities are not required to collect data concerning people with disabilities to ensure they are receiving quality and equitable care.

Decades of underfunding home and community-based services, like CCT, places low-income seniors, and people with disabilities at risk of unnecessary institutionalization. CCT is an integral part of the State’s ability to fulfill its obligation under the Olmstead decision to provide integrated services and supports to disabled people.

In California, however, without adequate financial commitment to HCBS, equity is elusive. Additionally, underfunding HCBS is particularly impactful for underserved communities of color. Failure to invest in CCT and address these low rates prevents California from realizing the goals of the Master Plan for Aging, and Governor Newsom’s recent Executive Order, N-16-22, enacted in part to reflect “that confronting inequality is not just a moral imperative, but an economic one.”[34]

Failure to address low provider rates likewise imperils the CalAIM Incentive Payment Program — without sufficient provider rate increases, capacity building cannot happen. Critically, HCBS Waiver programs and programs like CCT ultimately save the state millions of dollars by avoiding unnecessary institutionalization. The CCT program must be made permanent, with the infrastructure and rates needed to ensure that adults with disabilities and seniors have an opportunity to transition back to the community with the least number of barriers.

Long overdue In-Home Supportive Services (IHSS) changes are finally happening, but more changes are needed.

On June 1, 2022, the California Department of Social Services (CDSS) issued guidance making clear that immigrants with sponsors should not be denied IHSS benefits because of their sponsor’s income, as long as they are Medi-Cal recipients and meet all other eligibility. The new guidance also made clear that undocumented immigrants receiving Medi-Cal are eligible for IHSS, regardless of immigration status, including undocumented immigrants 50 and older who are newly eligible for full-scope Medi-Cal following the Older Adult Expansion. The Governor proposed to eliminate this benefit for undocumented immigrants earlier this year, but the Legislature understood the harm of this proposal and rejected it.

On December 21, 2023, CDSS released guidance implementing changes in state law that remove restrictions on when parents can be paid IHSS providers for their minor children with disabilities. These changes also eliminate unnecessary barriers to hiring a non-parent provider and ensure that children with disabilities in California can access the caregiving services they need to remain living safely at home.

This important new guidance is the result of years of advocacy led by disability organizations to end state policies strictly limiting access to services for minor IHSS recipients. Before these changes, parents could only be paid providers if there was no other suitable provider available and the parent was prevented from full-time employment due to the care needs of the child. A non-parent provider could only be hired if parents were not able or available to care for the minor child, among other eligibility requirements. The changes to state law and new guidance eliminate these restrictions, effective February 19, 2024.

These changes also address longstanding inequities impacting minor recipients living with a parent who does not have satisfactory immigration status. Under the old rules, children who were eligible for, and needed IHSS, were denied services based on their parents’ immigration status. As a result, these children went without any services at all, no matter how great the need. Under the new guidance, their authorized IHSS hours may now be covered by a non-parent provider.

IHSS still needs some reforms to better serve certain disability groups. For example, IHSS recipients who are blind, low vision, or have other print disabilities need access to written information and assistance in filling out documents. However, despite 40 years of advocacy, the state has refused to include reading of, and assistance filling out documents as an IHSS-covered service. This long-standing problem needs resolution by covering this service in the IHSS program.

People who need significant personal care assistance continue to face unfair limits on life choices.

People with disabilities whose income is above the level required for Medi-Cal eligibility frequently privately pay thousands of dollars annually for the personal care assistance and in-home services that they need to live independently and maintain their well-being. Personal care and other out-of-pocket health care costs will only increase as individuals age and acquire health conditions and potential additional disabilities.

Many disabled people who are part of this invisible population will never be able to afford retirement without being forced to risk institutionalization because of an ongoing need for personal care assistance, combined with the fact that a lifetime of work may result in retirement income that is above Medi-Cal eligibility levels. This is especially the case for disabled individuals who do not qualify for regional center services because their disability is not developmental. Similarly, marriage can affect eligibility for Medi-Cal, through eligibility rules tied to a spouse’s income or assets or, in the case of Disabled Adult Child Medi-Cal, for example, the fact of marriage itself. These outdated rules can even affect couples with levels of income far too modest to afford privately paying for necessary personal care assistance and home chore services while meeting their other basic needs.


[34] “Governor Newsom Strengthens State’s Commitment to a California for All.” Governor Gavin Newsom.