Families all over the country are struggling to find in-home care for people with disabilities. You call agency after agency, and they all say, “We don’t have anyone available right now.” It feels personal, but the truth is the system is broken—underfunded, understaffed, and confusing to navigate.
This guide explains why the shortage is so bad and what practical steps you can take right now, whether you’re a parent or an adult with a disability trying to live independently.
Who Actually Provides In-Home Disability Care?
When we say, “in-home care,” we’re usually talking about:
- Direct Support Professionals (DSPs) – workers who support people with intellectual and developmental disabilities (IDD) with daily life, communication, and community activities. (ANCOR)
- Home health aides and personal care aides – workers who help with bathing, dressing, eating, and sometimes simple medical tasks.
These workers are the backbone of Home and Community-Based Services (HCBS), which are programs that help disabled people live in homes and communities instead of institutions.
The problem? There simply aren’t enough of these workers:
- Almost 90% of organizations providing Medicaid-funded community services for people with disabilities report staffing shortages. (Axios)
- Many agencies say they are turning away referrals or closing programs because they can’t hire or keep staff. (InVision Human Services)
So when you call an agency and they say “we’re full” or “we’re short-staffed,” they’re often telling the truth.
Low Pay: When Other Jobs Beat Disability Care
One major reason for the shortage is money.
Direct care workers are doing high-responsibility jobs—helping with toileting, lifting, feeding, behavioral support, and sometimes life-or-death decisions. But in many places, they are paid less than jobs in retail or fast food.
- In 2023, home health and personal care aides earned an average median wage of about $15.18/hour, less than other entry-level jobs in every state.
- Healthcare support occupations (including home and personal care aides) had a median annual wage below the average for all occupations in 2024. (Bureau of Labor Statistics)
- In high-cost cities, home care workers are some of the lowest-paid workers, even though demand is huge. (San Francisco Chronicle)
These low wages are tied to how programs are funded. Many disability services rely heavily on public programs like Medicaid. When reimbursement rates are low, agencies simply can’t pay workers more. That makes it hard to compete with warehouse jobs, delivery jobs, or retail.
For you, this often shows up as:
- Agencies that can’t recruit enough people
- Good workers who burn out and leave
- Constant turnover, your child or you keep having to “start over” with new staff
Waitlists and Red Tape: The Services Exist, But You Can’t Reach Them
You might read about programs that help disabled people live in the community and think, Great—sign me up. Then you learn about waitlists.
Medicaid HCBS waivers and similar programs fund supports like:
- In-home aides
- Community support hours
- Respite for families
- Supported employment
But there are limits on how many people can be served at once. The result:
- In 2024, roughly 711,000 people were on HCBS waiting lists across the U.S., and the number has grown every year since 2021. (McKnight’s Home Care)
- People waited an average of 40 months (over three years) for services in 2024, and some newer data show waits close to 50 months in certain programs.
- Most people on these waitlists are individuals with intellectual or developmental disabilities.
So even if your child or you, as a disabled adult, qualify, you might still spend years waiting for help that’s already “approved on paper.”
On top of that, every state has its own rules, forms, and jargon. Many families don’t even know what to ask for, much less how to appeal a denial.
The Work Is Hard, and Support for Workers Is Thin
In-home disability care is real work, physically and emotionally:
- Lifting and transferring
- Helping with personal care
- Managing behavior or sensory overload
- Staying calm in crises
- Monitoring for seizures or other medical issues
Research has found high levels of stress and burnout among direct care workers, especially when they receive limited training, have no backup staff, and are paid low wages.
When workers don’t get:
- Enough training
- Supervisors who support them
- Clear career paths or raises
They are more likely to quit. This leads agencies to:
- Avoid “complex” cases
- Prioritize clients with fewer needs
- Cancel shifts or change staff often
If you are caring for a child with high medical or behavioral needs or you’re a disabled adult who needs more intensive support, you may feel this very directly. You might be told:
“We don’t have anyone comfortable with this level of care.”
That’s not about you. It’s about a system that fails to prepare and support workers. The shortage of in-home care for people with disabilities isn’t caused by “lazy families.” It’s driven by low wages, staff burnout, and long waitlists for services.
Rural and Underserved Communities: “No One Will Drive Out Here.”
If you live in a rural area or an underserved neighborhood, the struggle can be even more intense.
Studies show that rural communities face a major shortage of personal care aides and home health workers, with long distances and low pay making jobs hard to fill. (Healthforce Center at UCSF)
For families and disabled adults, this can look like:
- Agencies saying “we don’t serve that area.”
- Workers quitting because the drive is too long
- Very limited choice, you take whatever provider will come, even if the fit isn’t great
When there’s no public transportation and few local providers, “services on paper” don’t equal support in real life.
Families Fill the Gap, At a High Personal Cost
When the formal system doesn’t come through, families and disabled adults themselves often fill the gap.
Recent reports estimate:
- Around 63 million Americans are family caregivers, and many provide complex care for loved ones with disabilities or chronic conditions.
- Caregivers often face financial strain, isolation, and poor health, especially those providing many hours of hands-on care each week.
For parents, this might mean:
- Leaving a job or cutting hours to care for a disabled child
- Juggling appointments, school meetings, therapies, and nighttime care
- Losing sleep, health, and social connections
For disabled adults, it might mean:
- Relying heavily on aging parents or relatives
- Going without help and risking falls, meltdowns, or medical problems
- Feeling guilty for “being a burden,” even though the real problem is a lack of support
The key message: you are doing the best you can in a system that expects you to do almost everything.
Why This Shortage Hits Disabled People Differently Than Older Adults
You might wonder: Isn’t this just a general home care shortage? It is, but disabled people face extra barriers:
- Higher and more specialized needs
- Communication differences (non-speaking, AAC devices)
- Sensory needs and autistic burnout
- Behavioral challenges related to trauma or anxiety
- Medical tasks like feeding tubes, seizures, or complex meds
- Need for consistency
Many kids and adults with disabilities need familiar, trusted people. Constant turnover isn’t just annoying; it can be unsafe and emotionally traumatic. - Institutional bias
Some systems still lean toward group homes or institutions, especially when staffing is tight. That can make it harder to get enough help at home, even though laws support living in the community.
What to Do When In-Home Care for People With Disabilities Isn’t Available
You didn’t create this crisis. But there are concrete steps you can take while the larger system catches up. While you can’t fix the system alone, you can improve your chances of finding in-home care for people with disabilities by getting on waitlists early and exploring self-directed options.
A. Get on every relevant list (even if the wait is long)
Look into:
- HCBS waivers for people with disabilities in your state
- State disability services or developmental disability agencies
- Respite care programs
- Family support or “flexible funding” programs
Yes, waitlists can be years long. But getting your child or yourself on lists early is often the only way to eventually get funded support.
B. Ask about self-directed or consumer-directed options
Some programs let you or a trusted person:
- Recruit and choose your own workers
- Set schedules that actually fit your life
- Train workers in your child’s or your specific needs
These self-directed models can be a lifeline when agencies don’t have staff.
C. Build a “patchwork” of support, not just one perfect solution
Most families and disabled adults survive on a mix of:
- Part-time paid aides
- Family caregiving
- School or day programs
- Remote support/monitoring tools (where appropriate)
- Community programs and peer groups
It’s okay if your setup looks like a patchwork quilt instead of one neat service.
D. Connect with advocacy and peer networks
Other families and disabled adults are often the best source of practical tips, like:
- Which case managers are helpful
- How to phrase things on forms
- Which agencies treat people with respect
Look for:
- State disability councils
- Independent Living Centers
- Parent networks and autism/disability advocacy groups
- Online peer groups run by disabled people
Advocacy organizations also push for better funding, wages, and policies, which is crucial for long-term change.
E. Protect your own mental and physical health
If you’re a parent or family caregiver:
- Watch for signs of burnout: constant exhaustion, health problems, depression, or resentment
- Talk to your doctor or a therapist if caregiving stress feels overwhelming
- Even small breaks an hour alone, a walk, a support group matter
Recent surveys show caregiving stress is intense, with many caregivers reporting sleep problems, anxiety, and health issues because of the load they carry.
If you are a disabled adult:
- You deserve support and rest, too, not just survival
- Mental health care and peer support (especially disability-led spaces) can help you feel less alone
- You’re allowed to ask for help and set boundaries
What Needs to Change (Big Picture)
For this to get easier for you, your child, and disabled adults everywhere, we need:
- Better pay and benefits for direct care workers so these jobs can be long-term careers, not temporary stopgaps. (ASPE)
- More funding for HCBS so fewer people are stuck on years-long waiting lists. (KFF)
- Stronger training and career paths for DSPs and home care workers, especially around communication, behavior, and complex medical needs. (Medicaid)
- Policies that support family caregivers, including paid leave, flexible work, and recognition of the care they provide. (MediaRoom)
These are big changes. But understanding the real causes of the shortage is the first step toward fixing it.
Conclusion: It’s Not Your Failure, It’s a System Problem
If you’ve been struggling to find in-home care for a disabled child or for yourself as a disabled adult, the most important truth is this:
The shortage is not because you didn’t try hard enough. It exists because the systems meant to support disabled people are underfunded, understaffed, and too hard to navigate.
Across the country, providers report severe staffing shortages, especially in home and community-based services for people with disabilities. Many agencies simply can’t hire or keep enough workers, even as demand keeps rising. At the same time, hundreds of thousands of people remain on waiting lists for home-based services, often for years.
That leaves parents and disabled adults doing the impossible: filling in the gaps, working around the clock, and trying to stay safe and independent with far less support than they were promised.
You deserve better than that.
While you can’t fix everything alone, you can:
- Get on key waitlists and programs as early as possible
- Explore self-directed options where you can choose and train your own workers
- Build a patchwork of support from family, peers, and community programs
- Join with others: families and disabled adults to push for better pay, funding, and respect for disability care work
The long-term solution requires change at every level: fair wages for direct support workers, more funding for home- and community-based services, stronger support for family caregivers, and real commitment to disabled people’s right to live in the community.
Until that happens, know this: your exhaustion, anger, and grief are normal reactions to an abnormal situation. You are not alone, and needing more help is not a weakness. It’s a sign that you are doing everything you can in a system that still has a long way to go.
