If you are a caregiver, there is a pretty good chance someone has told you:

“Make sure you take care of yourself, too.”

And then they gave you absolutely no idea how you are supposed to do that.

Because taking care of yourself sounds great.

But who is going to stay with your child?

Who is going to take your spouse to the appointment?

Who is going to manage the medications?

Who is going to make dinner?

Who is going to deal with the insurance company?

And, most importantly:

Who is going to pay for somebody else to help?

This is where I want to talk about something many caregivers don’t hear about nearly enough:

There may be programs that can help.

Not every program is available in every state. Not every family will qualify. Some programs have waiting lists that appear to have been designed by people who have never actually needed anything urgently.

But there are resources worth knowing about.

And sometimes the hardest part isn’t getting the help.

It’s figuring out where to look for it in the first place.

---

First: Respite Is a Real Thing

Let’s start with the word that every exhausted caregiver needs to know:

Respite.

Respite care is temporary care that gives the regular caregiver a break.

That can look very different depending on the person and the program.

It might be:

• Someone coming into your home for a few hours
• A trained caregiver taking over for part of the day
• A specialized day program
• A disability-focused camp
• A community program
• A volunteer program
• Short-term residential care
• Emergency respite
• A voucher that helps pay for an approved provider

Respite isn’t necessarily someone taking over your entire caregiving job.

Sometimes respite means:

“Someone else is responsible for this person for three hours, and I can go grocery shopping without feeling like I am committing an act of rebellion.”

I’ll take three hours.

The federal Administration for Community Living’s Lifespan Respite Care Program supports state systems designed to make respite more accessible to family caregivers of children and adults across ages, disabilities, and chronic conditions. Respite can be planned or emergency-based.

That doesn’t mean there is one giant federal respite program you simply sign up for.

Unfortunately, it isn’t that easy.

Instead, federal funding can support state and local respite systems, so where you live matters.

Where should you look?

Start with:

• Your state’s disability agency
• Your state’s aging agency
• Aging and Disability Resource Center (ADRC)
• No Wrong Door system, where available
• Medicaid agency
• Community mental health agency
• Developmental disability agency
• Local disability organizations
• Your child’s school or transition team
• Your healthcare system’s social worker or care coordinator
• Local nonprofit organizations

The Lifespan Respite program specifically works through state systems and community organizations to expand and coordinate respite services.

And don’t assume respite is only for elderly caregivers.

Lifespan means lifespan.

The program is designed to support caregivers of people across the lifespan.

---

But Who Pays for Respite?

This is where things get complicated.

There isn’t one nationwide rule saying:

“You are a caregiver. Here’s your free respite.”

Wouldn’t that be nice?

Instead, respite may be funded through different sources, including:

• Medicaid programs
• Medicaid HCBS waivers
• State-funded programs
• Lifespan Respite programs
• Disability organizations
• Local grants
• Nonprofit organizations
• Faith-based organizations
• Community programs
• Private pay

Some programs are income-based.

Some are based on the care recipient’s disability or support needs.

Some are based on age.

Some have specific program eligibility requirements.

Some have waiting lists.

And some are available through a program you didn’t even know existed.

That’s why asking the right person matters.

Don’t just ask:

“Do you provide respite?”

Ask:

“What programs in my area can help pay for respite care for someone with this level of support need?”

That question gets you much farther.

---

Medicaid HCBS Waivers: Learn This Acronym

If you have a child or adult family member with significant support needs, you are going to hear another acronym:

HCBS.

It means:

Home and Community-Based Services.

Medicaid HCBS programs can provide services that help eligible people receive support in their homes and communities rather than relying solely on institutional settings.

Depending on the state and program, services may include things such as:

• Personal care
• Respite
• Habilitation
• Employment supports
• Day services
• Transportation
• Assistive technology
• Environmental modifications
• Case management
• Other long-term supports

But—and this is important—

Medicaid is not one identical program across the country.

States have different Medicaid programs, eligibility rules, waivers, services, and application processes.

Some programs also have waiting lists.

So if someone tells you:

“Your income is too high.”

Don’t necessarily stop there.

Ask:

“Are there Medicaid disability programs or HCBS waivers with different financial eligibility rules?”

That doesn’t guarantee eligibility.

But it makes sure you’re asking about the right program.

And don’t confuse SSI eligibility with Medicaid eligibility. They are related in some circumstances, but they are not the same determination.

---

SSI: Don’t Automatically Assume Your Family Makes Too Much

SSI stands for Supplemental Security Income.

It is a federal program for people with limited income and resources who are disabled, blind, or age 65 or older.

For children under 18 living with parents, Social Security may count some parental income and resources when determining SSI eligibility. This is called deeming.

But here’s something many parents don’t realize:

That parental deeming generally stops when the child turns 18.

At that point, the adult’s eligibility is evaluated under the adult rules.

So if your child was denied SSI as a minor because of family income, don’t automatically assume:

“They can’t get SSI.”

The answer can change when they become an adult.

And if your child has a disability that began before age 22, there is another Social Security program worth learning about:

Disabled Adult Child benefits, or DAC.

A person may qualify for benefits on a parent’s Social Security record if the disability began before age 22 and the other requirements are met. The person does not necessarily have to have worked themselves.

That is one of those things I wish somebody handed parents in a giant folder at age 17.

---

SSDI Is Different

SSDI stands for Social Security Disability Insurance.

Unlike SSI, SSDI is generally based on a person’s work history and Social Security work credits.

The number of credits required depends on the person’s age when the disability began. Younger workers can qualify with fewer credits.

And remember:

SSI, SSDI, and DAC are not interchangeable.

If you are trying to figure out which program applies to your family member, start with Social Security rather than relying on something somebody posted in a Facebook group in 2019.

Facebook is excellent for finding someone who knows someone who has a cousin whose neighbor once applied.

It is not necessarily excellent for determining federal benefit eligibility.

---

ABLE Accounts: Another Acronym Worth Knowing

Now let’s talk about ABLE accounts.

ABLE stands for:

Achieving a Better Life Experience.

An ABLE account is a tax-advantaged savings account for an eligible person with a disability.

Money in an ABLE account can generally be used for qualified disability expenses, and distributions for qualified disability expenses are generally tax-free. ABLE assets are also generally disregarded when determining eligibility for SSI and certain other means-tested federal programs, subject to program rules.

And ABLE eligibility rules changed in 2026.

Under current federal rules, the disability generally must have begun before age 46.

That means ABLE accounts aren’t just something parents of young children should know about.

They can be relevant to adults with disabilities, too.

An ABLE account may be useful for expenses related to things like:

• Housing
• Transportation
• Education
• Employment
• Assistive technology
• Healthcare
• Personal support
• Other qualified disability expenses

The exact rules matter, so don’t treat an ABLE account like an ordinary checking account.

But definitely put ABLE on your list of acronyms to investigate.

---

What About Tax Breaks for Caregivers?

This is another area where I want caregivers to at least know what questions to ask.

The federal Child and Dependent Care Credit may apply when you pay for care for a qualifying person so that you and your spouse, if filing jointly, can work or look for work. A disabled spouse or dependent of any age who meets the requirements can qualify.

There are specific rules about:

• Who qualifies
• Your earned income
• The care provider
• The type of care
• Your living arrangements
• How much of the expense can be used

So don’t assume:

“My child is an adult, so there are no caregiver-related tax benefits.”

And don’t assume the opposite, either.

Ask.

A tax professional can help determine which credits or deductions actually apply to your situation.

---

Can a Family Member Get Paid to Provide Care?

This is probably one of the biggest questions I hear from caregivers.

And unfortunately, the answer is:

Sometimes.

Some Medicaid programs allow participant-directed or consumer-directed services, and some state programs allow family members to be paid for certain approved caregiving services.

Other programs don’t.

There may also be restrictions regarding:

• Which relatives can be paid
• The type of service
• The person’s level of need
• Whether the service is authorized
• The number of hours
• Who can serve as the employer
• Background checks
• Training
• Medicaid enrollment
• State-specific rules

So I would never tell a caregiver:

“Medicaid will pay you to take care of your child.”

That is too broad.

Instead, ask:

“Does this Medicaid program offer participant-directed or consumer-directed services, and can a family member be the paid caregiver?”

Those are very different questions.

And if the answer is no, ask:

“Are there other Medicaid programs or state-funded programs that offer this?”

The goal isn’t to memorize every program in America.

The goal is to learn how to ask the next question.

---

What Do I Need Before I Apply?

This is where organization can save your sanity.

You don’t need a 900-page binder.

Although, if you already have one, I respect you.

Start with a folder—paper, digital, or both.

Keep copies of:

Medical information

• Diagnoses
• Evaluations
• Physician letters
• Therapy evaluations
• Medication list
• Equipment needs
• Hospital records when relevant

Education records

For children and young adults:

• IEP
• 504 plan
• Evaluations
• Functional behavior assessments
• Behavior plans
• Transition plan
• Related-service records

Care information

This is incredibly important.

Keep a simple record of what you actually do.

For example:

6:00 AM: medication
6:30 AM: assistance with dressing
7:00 AM: meal preparation/supervision
8:00 AM: transportation
9:00 AM: appointment
12:00 PM: medication
3:00 PM: behavioral support
6:00 PM: meal preparation
9:00 PM: medication

You don’t have to write a novel.

You’re documenting support needs.

Also document things that require:

• Prompting
• Supervision
• Redirection
• Physical assistance
• Communication support
• Safety monitoring
• Medication administration
• Personal care
• Transportation assistance

Sometimes a diagnosis doesn’t tell the whole story.

Function matters.

---

Don’t Just Document What Is Wrong

This is something I wish more caregivers were told.

When you’re applying for services, don’t only write:

“My child has autism.”

Tell them what that means.

For example:

“Needs verbal prompts to complete hygiene routines.”

“Cannot safely navigate the community independently.”

“Requires supervision around traffic.”

“Needs assistance with medication administration.”

“Requires support to communicate medical needs.”

“Cannot remain home alone safely.”

“Needs assistance preparing meals.”

The diagnosis tells someone what the person has.

The functional information tells them what support the person needs.

---

What If There Is a Waiting List?

Welcome to one of the least fun parts of the disability system.

Get on the list.

If the program is appropriate and you are eligible to apply, ask to be placed on the waiting list.

Then ask:

“What can we access while we wait?”

This question is huge.

You might find:

• Local respite grants
• Nonprofit assistance
• Emergency assistance
• Community programs
• Volunteer respite
• Faith-based programs
• Disability organizations
• Recreation programs
• Camps
• Caregiver support programs
• Food or utility assistance
• Transportation programs

Some communities also have local funds that aren’t widely advertised.

And this is where 211 can be useful.

Call 211 or use your local 211 system and explain the actual problem:

“I am a caregiver for an adult with a disability. I need respite and financial assistance while we’re waiting for another program.”

Don’t just say:

“I need help.”

Be specific.

Specific problems produce better referrals.

---

What If Someone Says No?

This is where your inner case manager gets to come out.

And if you’ve been reading my other articles, you already know I am going to tell you to document it.

Write down:

• Who you spoke with
• Date
• Program
• What you were told
• Why you were denied
• Whether you received a written decision
• Appeal deadline
• Who you can contact next

Then ask:

“Can you explain why we were denied?”

Then:

“Is there an appeal process?”

Then:

“Is there another program that might meet this need?”

And:

“Who can help me understand the denial?”

That last question matters.

You may be able to get help from:

• A case manager
• Benefits counselor
• Disability advocate
• Legal aid
• Protection and Advocacy organization
• Social worker
• Ombudsman, when applicable
• Family support organization

A denial does not always mean:

THE END.

Sometimes it means:

Wrong program. Wrong eligibility category. Missing documentation. Appeal. Different funding source.

Sometimes it really does mean no.

But you want to know which one you’re dealing with.

---

The Caregiver Application Strategy I Wish Everyone Had

Instead of trying to research everything at once, pick one need.

For example:

Need:

I desperately need someone to stay with my adult child for four hours each week.

Ask:

Is there respite?

Next:

Who provides it?

Next:

Who pays for it?

Next:

Does Medicaid cover it?

Next:

Is there a waiver?

Next:

Is there a state respite program?

Next:

Is there a nonprofit that funds it?

Next:

Is there a waiting list?

Next:

What can we use while we wait?

Now do the next need.

You don’t have to solve your entire life on Tuesday afternoon.

---

Your Caregiver Resource Tracker

I strongly recommend keeping a simple list.

Need	Program/Agency	What They Provide	Application	Status	Follow-Up
Respite
Transportation
Medical equipment
Financial assistance
Housing
Employment
Day program
Caregiver support

This becomes your caregiver command center.

And believe me, eventually you will need a command center.

Because caregiving has a remarkable ability to turn one problem into seven phone calls.

---

Start With These Questions

If you don’t know where to begin, take these questions to your next appointment, case-management meeting, school meeting, or agency call:

1. What services does this person qualify for right now?
2. Is respite available?
3. Is there Medicaid HCBS or another waiver that could help?
4. Are there participant-directed or consumer-directed services?
5. Can a family member be paid under this program?
6. Are there state or local respite programs?
7. Are there waiting lists I should get on now?
8. What can we use while we wait?
9. Are there benefits we should apply for, including SSI, SSDI, or DAC?
10. Would an ABLE account be appropriate?
11. Are there caregiver tax benefits I should ask my tax professional about?
12. If we are denied, how do we appeal?
13. Who can help me with the application?

And possibly the most important question:

“Who is the person who actually knows how this system works?”

Find that person.

---

You Do Not Have to Know Every Program

This is the part I really want caregivers to hear.

You are not failing because you don’t know what every acronym means.

You shouldn’t have to become an expert in:

SSI.

SSDI.

DAC.

HCBS.

ABLE.

ADRC.

CMS.

FMLA.

IEP.

IFSP.

CMH.

DME.

And approximately 47 acronyms that somebody will casually throw into a meeting while you’re sitting there thinking:

“Cool. Cool cool cool. What does that one mean?”

The goal isn’t to know everything.

The goal is to know:

What does my family need?

Who provides it?

Who pays for it?

How do I apply?

What happens if I’m denied?

What do we do while we wait?

That’s enough to get started.

---

And Please Don’t Wait Until You’re Completely Burned Out

Respite is not just something you look for after you have reached the point where you are sitting in the driveway crying because you don’t want to go back inside.

Although, unfortunately, many of us have found that particular driveway.

Respite is prevention.

Financial assistance is prevention.

Support services are prevention.

Asking for help before the crisis is prevention.

The federal Lifespan Respite program specifically recognizes respite as part of supporting the health and well-being of both caregivers and the people receiving care.

You don’t have to prove that you’re exhausted enough.

You don’t have to wait until everything falls apart.

You can say:

“I need help.”

And then—and this is the important part—

ask what kind of help exists.

Because sometimes the resource isn’t obvious.

Sometimes it’s behind another acronym.

Sometimes there’s a waiting list.

Sometimes you get told no.

Sometimes you have to call three more people.

And sometimes you finally find the program that makes one part of your life a little easier.

That one thing matters.

Because caregivers are people, too.

And you were never supposed to be the entire healthcare system, transportation department, financial planner, scheduler, advocate, medication manager, therapist, teacher, case manager, and emergency response team all by yourself.

You are allowed to need help.

And you are allowed to go looking for it.