Unit 3: What does this risk look like in real life?

A waiting list forms when more people need or seek HCBS than a program has funded openings or capacity to serve. Some Medicaid HCBS waiver programs can limit the number of people enrolled. When demand is greater than the available waiver openings, people may have to wait.

Waiting does not mean the services are unnecessary. It means the program does not currently have enough funded capacity to serve everyone who needs support.

Being on a waiting list does not mean a person has fewer needs or needs less support. A person may have significant, lifelong support needs and still wait years for services because there are not enough funded waiver openings or available services.

For some people, waiting can mean leaving school-based services and entering adulthood without the supports they relied on. People may go without needed personal support, therapies, assistive technology, home modifications, supplies, employment supports, or opportunities to participate in their communities.

Families are often forced to fill the gaps. This can mean reducing work or leaving a job, losing income, and taking on physical, emotional, and financial responsibilities that may become difficult or impossible to sustain.

When needed services are unavailable for too long, the consequences can become serious. A person’s health, safety, and well-being can deteriorate. Families can be pushed into crisis. People may be left in unsafe situations or face institutional care because the supports needed to live safely in the community are not available.

Key point: A waiting list reflects limits in funding and service capacity—not the level of a person’s need.

Waiting lists grow when there is not enough funded capacity to serve everyone who needs or seeks HCBS. That capacity depends heavily on federal Medicaid matching dollars, which supplement state Medicaid spending.

The direct support workforce crisis includes a shortage of workers, difficulty keeping workers, and difficulty finding workers whose skills and training match the individual needs of the people they support.

Some people cannot find anyone willing or available to provide their approved services. Others repeatedly lose workers and have to find and train someone new. Even when an agency can fill a shift, the available worker may not have the person-specific knowledge or skills needed to provide effective support.

The workforce crisis can look different from person to person. It may mean no worker is available, frequent turnover, uncovered hours, or workers who are present but are not prepared to support the individual safely and meaningfully.

Workers who provide day-to-day support may have different titles in different programs—such as direct support professional, personal assistance worker, or home care worker. The job titles and funding systems may differ, but good support should begin with the individual person.

A worker should know the person’s needs, communication, preferences, routines, strengths, equipment, health and safety needs, and goals—and have the person-specific skills to provide support in a respectful, person-centered way.

Good support should:

• presume competence and communicate directly with the person;
• support the person to make choices and direct their own life;
• respect autonomy while recognizing that people naturally rely on one another—supporting interdependence, not isolation;
• provide assistance in ways that allow the person to participate rather than unnecessarily doing things for them;
• support communication, including augmentative and alternative communication (AAC) when used;
• support relationships, employment, recreation, learning, health care, and participation in the community;
• understand and appropriately use the person’s assistive technology and equipment; and
• provide personal-care and health-related assistance with dignity and respect.

Home care and personal assistance should not be reduced to bathing, grooming, meals, or health-related tasks. Those supports are important, but they are part of a person’s whole life.

A person-centered approach looks at what support makes possible in the person’s life—not simply which tasks a worker completed.

A social-model approach focuses on removing barriers and providing the supports a person needs to participate, make choices, build relationships, and live in the community. It does not treat disability only as a medical problem to be managed.

History shows what can happen when federal Medicaid support falls while states are under financial pressure.

After enhanced federal Medicaid funding provided during the Great Recession was reduced, every state and the District of Columbia reduced spending in at least one home and community-based services (HCBS) program between 2010 and 2012. States reduced inflation-adjusted spending per person, served fewer people, or did both.

The pattern appeared again as temporary federal HCBS funding provided through the American Rescue Plan Act (ARPA) began to run out. ARPA temporarily increased the federal Medicaid match for qualifying HCBS expenditures by 10 percentage points, and states expected to spend nearly $37 billion to enhance, expand, or strengthen HCBS. Nearly all state spending plans included workforce-development initiatives such as recruitment and retention efforts, pay increases, bonuses, and training.

As those temporary funds were exhausted, five states—Connecticut, Maryland, New Jersey, Washington, and Wyoming—reported plans to eliminate provider-payment increases supported by the federal funding. Arizona, Maine, and Nebraska reported plans to eliminate other additional provider payments. More recently, Wyoming reported reductions to some HCBS rates in fiscal year 2026 specifically because the enhanced ARPA HCBS funding had expired.

For the direct support workforce, these funding decisions can affect whether providers can offer competitive wages and benefits, recruit and retain workers, provide adequate training, and maintain enough capacity to deliver services. People can be approved for services and still be unable to receive them.

Reducing or underfunding community services does not make the need for support disappear.
Unmet needs can affect health and well-being, employment, autonomy, relationships, and participation in community life. Families may have to fill service gaps, providers may reduce capacity or close, and costs and responsibilities can shift to families, health-care systems, other public programs, and more restrictive forms of care.

Sources:
Health Affairs — History Repeats? Faced With Medicaid Cuts, States Reduced Support for Older Adults and Disabled PeopleOpens in a new window
CMS — Strengthening and Investing in HCBS under ARPA Section 9817Opens in a new window
KFF — Payment Rates for Medicaid Home Care: States’ Responses to Workforce ChallengesOpens in a new window
KFF — A View of Medicaid Today and a Look AheadOpens in a new window

National data show that the direct support workforce crisis is not only about hiring—it is also about keeping workers and maintaining enough staff to provide reliable services.

Some key findings:

• Turnover remains extremely high. ANCOR’s 2025 report says national direct support professional (DSP) turnover continues to hover around 40%, with vacancy rates of approximately 12%–15%.
• Earlier National Core Indicators–Intellectual and Developmental Disabilities (NCI-IDD) data found a 40.9% weighted average DSP turnover ratio in 2022. Of DSPs who left their jobs that year, 62.3% had worked for the agency for less than one year.
• In ANCOR’s 2025 survey, 88% of responding providers reported moderate or severe staffing shortages.
• 62% turned away new referrals because they did not have enough staff, and 29% discontinued programs or services because of staffing shortages.
• 36% reported more frequent reportable incidents associated with staffing shortages, and 62% said staffing problems were making it difficult to meet quality standards.

Why these numbers matter: High turnover and vacancies can mean uncovered hours, frequent changes in workers, loss of continuity, fewer available providers, and difficulty finding workers with the person-specific skills needed to provide safe and effective support.

About these data: NCI-IDD and ANCOR primarily collect workforce information from organizations serving people with intellectual and developmental disabilities. These data do not represent every HCBS program or population, but they document the severity and persistence of the direct support workforce problem.

Sources:
NCI-IDD — State of the Workforce in 2022 Survey ReportOpens in a new window
ANCOR — The State of America’s Direct Support Workforce Crisis 2025Opens in a new window
MACPAC — Medicaid Payment Policies to Support the Home- and Community-Based Services WorkforceOpens in a new window