Why Home and Community-Based Services Matter

How Medicaid-funded services help people with disabilities live, work, and participate in their communities

Why This Issue Matters

For many people with disabilities, living at home, going to school, working, participating in the community, and staying connected to family and friends depend on having the right support.

That support may include personal care, transportation, employment services, respite for family caregivers, home modifications, or help building daily living skills. Many of these supports are available through Medicaid Home and Community-Based Services, commonly called HCBS.

HCBS are part of Medicaid, but they are different from the medical care people often associate with the program, such as doctor visits, hospital care, prescriptions, or therapy. HCBS provide practical, day-to-day assistance that can make community living possible.

What Are Home and Community-Based Services?

HCBS help people with disabilities and older adults receive care and support outside of institutions. Rather than requiring someone to live in a nursing home, intermediate care facility, developmental center, or another institutional setting, HCBS may allow the person to live at home or in another community setting.

Depending on the state, program, eligibility rules, and the person’s assessed needs, HCBS may include:

• Personal care assistance
• Respite for family caregivers
• Help learning or maintaining daily living skills
• Supported employment and community participation
• Behavioral supports and assistive technology
• Home or vehicle modifications
• Transportation
• Care or service coordination

Many HCBS programs are known as “waivers.” Under Section 1915(c) of the Social Security Act, states may waive certain Medicaid requirements to provide long-term services and supports in home and community settings. Programs, covered services, enrollment limits, and application processes vary by state.

Why HCBS Matter Across a Lifetime

HCBS are important for older adults, but they are also central to the disability service system for children, transition-age youth, and younger adults.

For a child with disabilities, HCBS may provide the support needed to remain at home with family. For a teenager or young adult, services may support the transition from school to adult programs, employment, or more independent living.

Adults with intellectual, developmental, or physical disabilities may rely on personal care, assistive technology, transportation, employment services, or home modifications to manage everyday life. Respite and other services can also reduce caregiver burnout and help families continue providing support at home.

HCBS are not a luxury. For many people and families, they are part of the infrastructure that makes community life possible.

Why Access Can Be Fragile

Need does not always translate into immediate access. Many HCBS programs are optional under Medicaid, allowing states to determine which programs to offer, which services to cover, how many people may enroll, and how much funding to allocate.

A person may meet a program’s disability or care-related criteria and still be placed on a waiting list because no funded opening is available. Access may also be affected by provider shortages, reduced service hours, complicated renewals, or a lack of providers in the person’s community.

Recent federal Medicaid changes under the One Big Beautiful Bill Act (OBBBA), P.L. 119-21, have increased concern about state Medicaid budgets and optional services, including HCBS. The effects will not necessarily look the same in every state, but families and advisors should watch for:

• Longer waiting lists or delayed approvals
• Reductions in services or approved hours
• Limits on respite, personal care, employment, transportation, or behavioral supports
• Providers being unable to deliver approved services
• More difficult application or renewal procedures
• Greater reliance on unpaid family caregivers

Some of these challenges existed before the recent federal changes. New budget or administrative pressures may compound problems families were already experiencing.

Why HCBS Belong in the Special Needs Planning Conversation

Special needs planning should reflect the person’s actual life, not simply the benefits or legal documents listed in a file. Attorneys, trustees, financial professionals, caregivers, and advocates should understand which services the person receives, which programs fund them, and what would happen if those supports were interrupted.

Important questions include whether the person is enrolled or waiting for services, who monitors reassessments and renewals, and how housing, employment, transportation, caregiving, and trust distributions fit into the broader plan. These answers can help families and their professional teams identify gaps and prepare for future transitions.

How Mission Trust Can Help

Public benefits are only one part of a thoughtful special needs plan. A Special Needs Trust can provide additional resources for a beneficiary’s needs and quality of life while helping preserve eligibility for certain means-tested benefits.

Mission Management & Trust Co. can serve as professional trustee, managing trust assets, reviewing distributions, maintaining records, and working with families, caregivers, attorneys, and other advisors to keep the beneficiary at the center of trust administration.

The Bottom Line

HCBS help people with disabilities live in their homes and communities rather than in institutions. Because many programs are optional and state-administered, access may depend on funding, eligibility rules, waiting lists, provider availability, and service restrictions.

For many people with disabilities, HCBS are more than a category of Medicaid-funded services. They are what make a life in the community possible.

Source Note: Adapted from HCBS 101: Why Home and Community-Based Services Matter to People With Disabilities and Their Families, a resource developed by the National Academy of Elder Law Attorneys (NAELA) and the Special Needs Alliance (SNA).