In-Home Care for Disabled Individuals and Their Families

Adults with disabilities include people with physical disabilities, intellectual or developmental disabilities, brain injuries, chronic health conditions, and age-related functional limitations. The goals are consistent regardless of disability type: help you stay in your own home, maintain daily routines, and participate in your community.

These two categories of in-home care are often confused, but they serve different purposes.

Home health care is medically focused and requires licensed professionals. It includes skilled nursing, physical therapy, occupational therapy, speech therapy, wound care, and medication management. Medicare covers home health services for eligible individuals who are homebound and require skilled care ordered by a physician. Medicaid may also cover home health services, though coverage varies by state.

Non-medical home care covers assistance with daily living activities rather than clinical treatment. This includes help with bathing, grooming, personal hygiene, meal preparation, light housekeeping, grocery shopping, medication reminders, and transportation to medical appointments. These services do not require a licensed medical professional to deliver.

Both types can be part of a care plan for a disabled adult living at home. Which one you need depends on your health and functional situation.

For a deeper dive on the differences between home care and home health care, check out this U.S. News article.

For many disabled adults, Medicaid is the primary pathway to funded in-home care. Most states offer Home and Community Based Services (HCBS) waivers, which allow Medicaid funding to be used for home-based supports rather than care in a nursing home or long-term care facility.

Because HCBS programs are state-administered, program names, eligibility requirements, covered services, and budget structures vary significantly by state. Most states operate multiple waivers serving different populations, including older adults, people with physical disabilities, and people with intellectual or developmental disabilities.

One important thing to know: many HCBS waiver programs have enrollment limits, and waitlists are common. Contacting your state Medicaid office or a benefits counselor early is important because enrollment is not always immediate.

To find the waiver programs available where you live, visit PPL’s state programs page.

While names and structures differ by state, here are some common program types:

DD Waivers support adults with developmental disabilities. They typically fund personal assistance, community participation, employment services, behavioral support, and respite for family caregivers.

Assisted Living Waivers help people who might otherwise need nursing-home-level care to access personal care services in a less restrictive setting.

PACE (Program of All-Inclusive Care for the Elderly) serves adults 55 and older who meet nursing-facility-level care requirements. It provides comprehensive medical and social services while supporting the person to remain at home.

MSSP (Multipurpose Senior Services Program) is available in some states and funds community-based care management for older adults at risk of nursing home placement.

Not every program type exists in every state. Always verify specifics with your state Medicaid office or a benefits counselor before making decisions based on what you read here.

One of the most meaningful options available through many HCBS programs is the ability to hire a family member or trusted friend as a paid caregiver. This is called self-directed care.

In a traditional care model, an agency assigns a worker to your home. With self-direction, you choose who provides your support, set the schedule, and manage the relationship directly.

Benefits of hiring a family member include:

• Comfort and trust with someone who already knows your routines and needs
• Greater continuity of care
• Flexibility in scheduling
• Financial support for a family member who may already be providing unpaid help

Things to be aware of:

• Rules about which family members can be hired vary by state and program. Spouses and parents are sometimes excluded from certain service types depending on the program.
• Some programs require caregivers to complete specific training before providing certain services.
• As the employer, you take on payroll and tax responsibilities, which are typically managed with the help of a Financial Management Services (FMS) provider.

An FMS provider handles the administrative side of self-direction: payroll, employment taxes, enrollment paperwork, and compliance, so you can focus on your care rather than the paperwork.

In-home care works best when it is organized around a written plan tailored to your individual needs. Most Medicaid waiver programs require a formal needs assessment before services begin, conducted by a case manager or support coordinator.

A strong care plan addresses both ADLs (activities of daily living) such as bathing, grooming, and mobility, and IADLs (instrumental activities of daily living) such as meal preparation, medication reminders, and managing medical appointments. It should also document personal preferences and emergency instructions for caregivers. Set measurable goals with your clinical team and revisit the plan regularly, because needs change over time.

• Medicaid is the largest public funder of long-term in-home care for disabled adults. HCBS waivers are the most common pathway, and some states also cover personal care services directly through their Medicaid state plan.
• Medicare covers home health care for eligible individuals who are homebound and have a documented skilled care need. It does not cover ongoing non-medical personal care or long-term custodial care.
• Long-term care insurance may cover in-home care depending on the policy. Review coverage details carefully, as benefit triggers and covered service types vary.

A benefits counselor can help you understand which programs you may qualify for. Many state aging and disability resource centers offer this guidance at no cost. Affordable in-home care is an option. 

Family members who provide ongoing care carry a significant load. Respite care provides temporary relief by arranging for another person to step in so the primary caregiver can take a break.

Respite can be provided in-home, at an adult day program, or through a short-term residential stay depending on what is available in your area. Many HCBS waiver programs include respite as a covered service. Building it into your care plan on a regular schedule, rather than waiting until you are exhausted, is one of the most practical ways to keep home care sustainable.

Self-directed care may be a good fit if you want more control over who supports you, when they work, and how your care is organized. It works especially well when there is already a trusted family member or friend who is willing to provide support.

Not sure if self-directed care is the right option for you or a loved one? Take PPL’s questionnaire to find out.

Public Partnerships LLC (PPL) is a Financial Management Services provider that supports self-directed care across approximately 50 programs in the United States. PPL handles the administrative side of self-direction, including payroll, employment taxes, enrollment paperwork, and compliance, so participants can focus on their care. PPL has supported more than 500,000 participant and caregiver relationships and processed over $10 billion in goods and services payments. Self-directed care is all they do.