For Disabled People, Home and Community-Based Services Are a Lifeline

Federal Medicaid officials are proposing reforms to improve access to home and community-based services for disabled people. In addition, officials are hoping to strengthen the workforce of direct support professionals.

The Centers for Medicare & Medicaid Services issued two proposed rules in the Federal Register this week that the agency said would “establish historic national standards for access to care regardless of whether that care is provided through managed care plans or directly by states through fee-for-service.”

States would be required under the proposal to annually examine the requirements of each individual receiving home and community-based services and adjust service plans accordingly. Furthermore, the rule would mandate that at least 80% of what Medicaid spends for personal care, homemaker, and home health aide services go directly toward paying the provider rather than for administrative or business goals. Additionally, states must report the average hourly wage paid to direct care workers.

The 130-page regulation also requires states to report on the length of their waiting lists, whether people can get services after obtaining a waiver, and different quality criteria in their home and community-based care waivers. Examples of covered services under a Medicaid HCBS waiver include hospice care, home modifications, durable medical equipment, home healthcare, and home-delivered meals.

CMS would expect states to maintain an electronic incident management system and respond to occurrences within specified time constraints. States would also be required to establish a grievance process for recipients of home and community-based services in conventional Medicaid plans, similar to those for individuals in managed care plans.

The proposed changes come when home and community-based service providers across the country are struggling for survival and the ability to retain direct support staff. Data from a survey conducted last fall reveals that over 60% of providers have stopped offering programs in the previous year. Additionally, over 80% of providers say they have turned away disabled people.

In Pennsylvania, for example, more than 12,000 individuals are on the HCBS waiver waitlist. And 5,400 are categorized as having emergency needs, indicating that they are at risk and require services immediately.

Nationwide, direct support positions are unfilled, which leaves many people without services. Donnie Dugan has not attended his day program in Massachusetts since the COVID-19 pandemic began. There isn’t enough staff to allow Dugan to participate.

Low wages deter many people from applying for direct support jobs. The state pays employees at day programs around $16 an hour. However, the minimum wage is just a dollar less at $15. Mike Hyland, president, and CEO of Venture Community Services, says that most people work multiple jobs to make ends meet.

The effort includes significant revisions to the rules governing home and community-based services through the Ensuring Access to Medicaid Services regulation or the Access Rule.

CMS is also releasing a proposed rule on Managed Care Access, Finance, and Quality in addition to the Access Rule. This regulation would require states to conduct regular surveys of managed care enrollees about their experiences, institute maximum appointment wait time standards, and require states to conduct secret shopper surveys annually to ensure that managed care plans are complying with appointment wait time standards and that their provider directories are accurate, among other changes.

Disabled people across the country need access to home and community-based services. The system is in crisis and on the verge of collapse. Individuals with intellectual and developmental disabilities have the right to reside in their communities. All disabled people should be able to live their lives to the fullest.


Casey, Thom. “System for Individuals with Intellectual Disabilities, Autism Will …” Rehabilitation & Community Providers Association, Rehabilitation & Community Providers Association, 3 May 2023,

Diament, Michelle. “Feds Want to Shake up Rules for Home and Community-Based Services.” Disability Scoop, Disability Scoop, 5 May 2023,

Diament, Michelle. “Nation’s Disability Services at Breaking Point, Report Finds.” Disability Scoop, Disability Scoop, 2 Mar. 2023,

DeCosta-Klipa, Nik. “After $15, What’s next for the Mass. Minimum Wage?” WBUR News, Boston University, 16 Feb. 2023,

“Home- and Community-Based Services.” Centers for Medicare & Medicaid Services, United States Department of Health and Human Services,

LeMoult, Craig. “Thousands of Adults with Intellectual and Developmental Disabilities Have Lost Access to Day Programs in Mass..” WGBH, WGBH Educational Foundation, 27 Apr. 2023,

Leave a Reply