Home Health and Hospice Frequently Asked Questions

What You Need to Know as You Seek Care for You or a Loved One

Don’t let your many questions about hospice or home health care prevent you from finding compassionate, expert support. We’ve answered the most common questions here, so you can make informed decisions for yourself or a loved one.

Getting Started with Home Care

Start with a conversation, not a contract. We make the process of finding care simple and personal. Call our CARE Team at (866) 296-0493. They’ll walk you through every step, answer your questions, and help you feel confident about your next move.

View our complete list of home care and hospice services.

Yes, round-the-clock care is available.

Home care and home healthcare are general terms for all services provided in the home.

However, home health services are skilled services provided by licensed professionals, such as registered nurses (RNs) and therapists. Visit our home health services page to learn more.

Yes. Contact our team to find out which Phoenix service is the best fit for your needs.

Yes. Our team is highly trained and sensitive to the needs of people with these conditions.

Hospice is a complete service offered by our team. Visit our hospice page to learn more.

Cost depends on what kind of care you need, how often you need it, and how it’s paid for. Here’s a quick breakdown:

  • Private duty care rates: Typically paid out-of-pocket, rates vary by location and level of care, such as whether you need personal care or nursing. Scheduling is flexible, allowing you to choose care in two-hour blocks of time or even 24/7 support.
  • Medicaid-covered programs: Medicaid may cover care through programs like Healthy Children and Youth Private Duty Nursing,
  • Private insurance: Ask your provider about reimbursements for some home health costs.
  • Veterans benefits: Contact the Department of Veterans Affairs’ benefits hotline at (877) 222-8387 to find out what may be covered.
  • Medicare-covered programs: Medicare may cover home health services and hospice.

Yes, but please refer to our answer to the question above to understand what may be covered by these plans.

If you or a loved one receives private duty care, we offer a payment plan for those with financial hardship. For all other services, please contact your state assistance program.

Minimums vary based on the service lines we provide. Medicaid programs are state-authorized and must follow the authorization provided for time spent receiving care. You can receive private duty care for at least two hours per visit.

If you’re starting to worry about your loved one’s safety, health, or independence, it’s time to explore options. Here are signs that home care might help:

Daily life is getting harder:

  • Trouble with bathing, dressing, or meals
  • Forgetting medications or missing appointments
  • Overwhelming errands and housekeeping

Health and safety risks are rising:

  • Frequent falls or mobility issues
  • Worsening chronic conditions
  • Noticeable weight loss or decline in hygiene

You’re feeling stretched thin:

  • Family caregivers feel burned out or overextended
  • You’re unsure what kind of help your loved one needs, but you know they need something
Yes, you are more than welcome to do so! Ask our team to set up this meeting.

Caregivers do not need to be licensed, but they are highly trained. We run background checks on all our employees.

We try to keep the same caregiver with patients as much as possible.

If you feel comfortable with this solution, we will fill the opening with another Phoenix caregiver.

Absolutely. Let us know how we can best meet your needs.

When we hire, we look for the “x-factor” that separates good nurses and caregivers from those who are genuinely excellent, committed, and compassionate. We also offer continued training and retention programs to keep the best talent on Team Phoenix.

Phoenix Home Care & Hospice has offices throughout Missouri, Kansas, and Illinois.

Phoenix Home Care & Hospice is unlike any other home health provider. When you choose Phoenix, you experience:

  • A relationship-centered approach; we care for the whole person.
  • Compassionate care centered on improving patients’ quality of life.
  • A commitment to providing New Beginnings for both patients and team members.
  • A talented care team, hand-picked for their skill, experience, and investment in professional growth.
  • Engaged founding members who keep us close to our mission and values.

Senior care ranges from minimal support to round-the-clock medical supervision. Care services include:

  • In-home care helps with daily tasks like bathing, dressing, and meals.
  • Adult day services offer daytime supervised programs that include social activities and basic health monitoring.
  • Independent living is a form of community living for active seniors who want a maintenance-free lifestyle.
  • Assisted living offers independence and support for daily activities like medication management and housekeeping.
  • Memory care is a specialized form of assisted living for dementia, providing a structured, secure environment.
  • Skilled nursing provides 24/7 medical and personal care with skilled nurses and rehab.
  • Continuing Care Retirement Communities (CCRCs) are campuses offering multiple care levels as your loved one’s needs change.

When trying to identify the right homecare professional for a loved one, consider their qualifications along with their personality traits, so that you know they’ll be cared for and feel comfortable.

Essential qualifications include background checks, employment and training by a licensed agency, and experience with your loved one’s specific needs. Key personality traits should include patience, honesty, and compassion. Your loved one deserves to be treated like family while receiving expert care at home.

In-Home Care & Caregiver Services

Live-in caregivers are available through local caregiving agencies. These caregivers provide consistent care around the clock. However, caregivers don’t have to live in the home to provide 24/7 care. Private duty caregivers are also available 24/7, delivering all the benefits, help, and support of a live-in caregiver without the client providing a place for them to stay. A leading home care provider can staff familiar, professionally trained private duty caregivers who take shifts to ensure the team is rested, refreshed, and ready to provide care.

Professional caregiving agencies are always the first choice for a 24/7 caregiver to ensure professionalism, high standards, and expertise. Ask your chosen agency about each of these categories to determine the right fit:

  • Professionalism: How are your caregivers trained? What are your standards for caregivers?
  • Standards: What standards or values should I expect to see in action during caregiving?
  • Expertise: What makes your caregivers different from others in the area?

As you search for a caregiver, keep in mind that “live-in caregivers” go by other names in the caregiving marketplace, including private duty caregivers. Private duty care, like live-in care, provides professional caregivers in two-hour blocks of time up to 24/7 care. Private duty caregivers help with daily living tasks, such as housekeeping, meal preparation, laundry, transportation, companionship, and more, just like a live-in caregiver.

Live-in home care offers 24/7 care in your home, so that there is always someone present for help with daily tasks, such as personal care, housework, companionship, transportation, and medication reminders. A comparable service, private duty care, can also staff caregivers around the clock without the client providing living space for the caregiver. This is the typical process for starting care with a live-in or private duty caregiver:

  • The caregiving agency assesses your needs, preferences, and care goals.
  • They create a customized care plan, including all important details.
  • You are assigned a professional caregiver or caregiving staff who can meet your needs.
  • Your caregiver(s) arrive as scheduled to provide ongoing care, 24/7.
  • Your agency sets up regular communication to ensure care is going as planned.

A Certified Nursing Assistant (CNA) job and a caregiver job support people at home. CNAs are certified care professionals. Caregivers may or may not be certified depending on the particular job and state requirements.

A CNA role requires a formal certification and often includes more hands-on personal care that requires clinical training. A caregiver job may include some personal care, but focuses on daily living support, including light housekeeping, laundry, meal preparation, medication reminders, and companionship.

When considering hiring a live-in caregiver, ask yourself whether you can realistically accommodate living space for another person in your home. If not, you have an alternative option, private duty care, which provides caregiver coverage 24/7 without the need to live in. Regardless of what you choose, ensure that you interview your caregiver agency to understand how they are screened and trained, what to expect during services, whether available services will meet your specific needs, and how the agency communicates when you have questions or concerns.
Yes, but the comparison will require effort and research to determine the best choice for you. Start with websites and reviews. However, it is critical to go deeper and get peace of mind by asking your questions during an interview with a potential caregiver agency. Here are some example questions to help you evaluate their services:

  • How do you screen caregivers?
  • What kind of training do they receive?
  • Do you always send the same caregiver?
  • How do you communicate with your clients?
  • What should we expect from our caregiver?
  • What makes your caregivers special?
Look for reliability, clear communication, and the right fit. You should feel completely comfortable with your caregiver, know what to expect from them, and be able to communicate openly and honestly with them. Also consider researching the caregiver agency’s values. Their values should match your own and should show up in the way your caregiver delivers care.
Caregiver support services are available to help ease the burdens of family caregiving. Here are five different support resources that may be able to help:

  1. Comprehensive disease management, also known as chronic disease management, provides assistance with several aspects of caregiving, including help with care coordination, setting care goals, collaborating with physicians, emotional support, durable power of attorney, and advance directive paperwork, access to community resources, and more.
  2. Consumer-Directed Care allows families to hire their own caregivers, including family members, while a home care agency handles the administrative work. For veterans, the Department of Veterans Affairs offers a stipend, health insurance, and mental health counseling to family caregivers through the Program of Comprehensive Assistance for Family Caregivers.
  3. Respite care programs to help family caregivers take a break are available through care services like private duty care, Home and Community-Based Services (including waiver programs), and hospice.
  4. Emotional support programs help family caregivers navigate their challenging role. Consider the Caregiver Action Network (CAN); disease-specific organizations, like the American Cancer Society; or online communities with message boards where caregivers share their experiences and give each other hope.

Support for family caregivers can be found through national organizations and local caregiver agencies.

The National Family Caregiver Support Program gives caregivers access to information and available services, such as counseling, to provide relief from stress and even suggestions to improve the quality of care you provide.

Local home care agencies are a resource for family caregivers who need additional support, including In-Home Medicaid, Department of Mental Health, Consumer-Directed Services, private duty care, and more.

Respite care is specifically available through private duty care, which is a flexible caregiving service that comes to your loved one’s home in two-hour blocks, up to 24/7 care. Private duty care is paid for out-of-pocket, through long-term care insurance, or qualifying VA benefits.

To get support as a family caregiver, choose a service that fits your needs:

  • National Family Caregiver Support Program(NFCSP): NFCSP is a federal program that provides information, resources, counseling, support groups, training, education, and more.
  • Family caregiving services in your state: Each state has an organization that delivers NFCSP services. For example, in Missouri, the Area Agency on Aging provides a wealth of information, including a “Taking Care of Yourself as a Caregiver” resource.
  • Disease-specific support: Foundations dedicated to certain chronic illnesses, such as Alzheimer’s and dementia, provide specific resources for caregivers and their loved ones.
  • Caregiver agencies: Local care agencies provide help for caregivers with home care through services like In-Home Medicaid, Consumer-Directed Services, Department of Mental Health, private duty care, and more.

Hospice & End-of-Life Care

The best hospice company in your state or region is determined by customer trust, quality of care, and expertise. Each part of the United States has premier hospice care providers who stand out from the rest.

The best regional hospice providers:

  • Gilchrist, serving the Mid-Atlantic region (Maryland, South-Central Pennsylvania, and Northern Virginia).
  • Hospice of the Valley, serving Maricopa County, northern Pinal County, and the Tucson area in Arizona.

The best state and multi-state providers:

  • Ohio’s Hospice
  • Hospice of Michigan
  • Phoenix Home Care & Hospice, serving Kansas, Missouri, and Illinois

Hospice care begins with a care team visiting your home to explain hospice benefits. The team will also create your individualized care plan in collaboration with your physician and hospice physician.

Hospice care provides the following services:

  • 24/7 on-call nursing support for questions and concerns
  • Hospice aide visits for personal care
  • Medical social work for resources and emotional support
  • Chaplain services for spiritual care
  • Medications, supplies, and equipment related to the terminal illness
  • Short-term respite care for caregiver relief
  • Bereavement support for families
  • Trained volunteers for companionship
  • Additional comfort-focused services, such as physical, occupational, or speech therapy, and dietary counseling, when needed
  • A care plan tailored to individual patient needs
  • General inpatient (GIP) hospice when needed

Across Missouri, Kansas, and Illinois, you have several options for end-of-life care. The most common form of hospice care is home hospice, which occurs in a residential setting, such as your house, nursing home, or skilled nursing facility. General inpatient (GIP) hospice at a hospice house or hospital is also available for short-term hospice services when family caregivers need a break or symptom and pain management requires more support than can be provided at home.

Your options also include a choice between local, regional, state, and national providers. Local providers specifically serve your community; regional providers balance a local approach with a wider reach; statewide or nationwide providers offer the broadest coverage, while serving individual communities.

Hospice care can be specifically tailored to the needs of dementia patients, including compassionate, sensitive care for pain and symptom management, emotional care, and spiritual support.

Dementia is a life-limiting illness that qualifies for hospice when a doctor certifies that they’ve met certain criteria based on the Functional Assessment Staging Tool (FAST) scale. This scale identifies cognitive and verbal decline, physical complications, nutritional decline, and an inability to perform activities related to daily living, such as walking, bathing, and dressing.

If a dementia patient can still make medical decisions, they determine whether hospice is the next best step. If not, the decision usually falls to their legally authorized representative, such as a healthcare proxy or durable power of attorney.

Hospice is comfort-focused care for someone with a life-limiting illness that would normally run its course in six months or less. Instead of trying to cure or treat the illness, hospice focuses on pain and symptom management and enhancing the patient’s quality of life as much as possible. Under Medicare, patients qualify for hospice when they wish to stop treatment and choose comfort care for their terminal illness, and their doctor orders hospice.

During hospice, your chosen team creates an individualized plan of care that is centered on pain management, comfort, and quality of life. Care can include nursing visits, a bath aide, social workers, spiritual support from a chaplain, community volunteers, and bereavement counseling.

All medications, equipment, and supplies related to the patient’s terminal illness are provided. A 24/7 nursing line is available for after-hours questions and concerns. There are options for inpatient respite care to give family caregivers relief and general inpatient care (GIP) when additional care is needed to control symptoms. Some hospice agencies also provide pamper care (e.g., hair styling, premium bath products, nail polish, and other self-care routines) to further enhance patients’ dignity and quality of life.

Palliative care focuses on pain and symptom management. It can begin at any stage of an illness and is provided alongside treatment that is meant to cure or manage the disease.

Hospice is a specific Medicare benefit for people with a life expectancy of six months or less and who have chosen the comfort of pain and symptom management instead of seeking a cure for or management of their illness.

Palliative care and hospice care are often used interchangeably, as a hospice patient is receiving the same kind of care that palliative care provides, just under different circumstances. You will hear many patients and healthcare professionals refer to hospice as palliative care, but from a Medicare perspective, the difference is distinct.

Hospice is 100% paid for through Medicare or Medicaid. The hospice benefit includes these services:

  • An RN case manager,
  • Collaboration between your care team and your physician
  • 24/7 on-call nursing.
  • Hospice aide for scheduled visits and personal care.
  • Medication, supplies, and equipment related to the terminal illness.
  • Medical social workers for emotional support and resources.
  • A chaplain for spiritual counseling and support.
  • Bereavement services for the family.
  • Trained volunteers for additional support.
  • Special comfort care services when appropriate, including physical therapy, speech therapy, occupational therapy, or dietary counseling.
  • General inpatient hospice for help managing severe pain and symptoms.
  • Pamper care, including premium bath products, curling and blow-drying, nail polishes, and other extras.

If you have heart failure, hospice care is available based on certain medical criteria, as determined by a physician. According to the American Heart Association, you are eligible for hospice care under these general criteria:

  • A terminal condition (heart disease) that would normally run its course in six months or fewer.
  • Additional circumstances, such as congestive heart failure, inability to move blood out of the heart’s chambers, chest pain at rest, documented cardiac arrest and/or resuscitation, syncope, and arrhythmias.

The Centers for Medicare & Medicaid Services provide a much more detailed description of qualifications, including decline in clinical status, symptoms, and clinical indicators, such as the Palliative Performance Scale and dependence in at least two activities of daily living (ADLs).

Hospice care is 100% covered by Medicare, Medicaid, and most private insurance plans.

Benefits include:

  • An RN case manager to monitor and adjust your care plan.
  • Close collaboration between your hospice team and physician.
  • On-call, 24/7 nursing support.
  • Medical equipment, medications, and supplies.
  • Comfort care for pain and symptom management.
  • Medical social workers for companionship, access to resources, and counseling.
  • A hospice aide.
  • Visits from a chaplain for spiritual support and counseling.
  • Respite care for family caregivers.
  • Bereavement support for the family.
  • Community volunteers for extra help and companionship.

Additional coverage includes general inpatient hospice for uncontrolled or severe pain and symptom management, along with special services where appropriate (e.g., physical, occupational, or speech therapy, along with dietary counseling).

Private hospice care at home delivers comfort-focused physical, emotional, and spiritual care right where you live. Your hospice team will dedicate themselves to your well-being. They will include a hospice physician, nurse, medical social worker, chaplain, and even community volunteers. You will receive regular visits that are specifically tailored to your needs, along with 24/7 support by phone and emergency visits if care needs change. Care primarily focuses on making you feel comfortable and as pain-free as possible, while also providing the support your family may need during this time. Hospice services, including supplies, equipment, and medications related to your condition, along with the care provided by your team, are covered by Medicare, Medicaid, or private insurance.

Hospice care focuses on comfort, dignity, and quality of life by addressing your physical, emotional, and spiritual needs. Repeated ER visits and hospitalizations are usually focused on uncontrolled symptoms and getting you stable so you can return home. During hospice, your care team takes a proactive approach to pain and symptom management, while also providing support, presence, and compassion through the help of team members like a chaplain, medical social worker, and community volunteers. Families also get support through hospice.

A hospital’s primary goal is to provide treatment for an immediate need; hospice’s goal is to let you feel as comfortable as possible to experience meaningful time with your family in a peaceful environment.

The most meaningful gifts are the ones that come from the heart. They establish connections and let a person know you are thinking of them. During hospice, comfort and quality of life are the number one priority. Consider a gift that offers comfort and warmth, such as a soft blanket, pajamas, or even an item requested by family members that they think would be useful. Your loved one may also be reflecting on their life during this time, so sentimental, personal gifts could be a great choice, such as photographs, handwritten notes, or even a digital photo frame. Family caregivers also need care during this time. Many friends and family offer meal delivery gift cards or organize meal trains.
The Functional Assessment Staging Tool (FAST) scale is a seven-stage tool used to track dementia progression. It specifically considers your loved one’s participation in day-to-day life. Stage 1 represents normal function, where Stage 7 includes several sub-stages (a through f) such as limited speech, mobility, and other basic functions. Hospice eligibility begins at Stage 7a, when speech is limited to six or fewer words in a day. Your loved one’s physician can determine whether they are eligible for hospice. Your chosen hospice provider can help you understand your benefits and initiate the care your loved one needs.

Finding high-quality hospice care may require some online research or simply asking those you trust.

Resources like Medicare Care Compare and National Hospice Locator can identify local providers. You can also ask your primary care doctor, hospital discharge planner, or a social worker for support, along with family members and friends who may have had an experience with hospice in the past.

No matter who is recommended, it is always important to interview your chosen team to see if their values align with yours and that they offer comprehensive benefits that cover your loved one’s physical, emotional, and spiritual needs. A team with values like patience, honesty, and compassion are likely to provide excellent services.

A hospice evaluation is a free, no-obligation assessment conducted by a hospice professional to determine if a patient with a serious, chronic illness meets Medicare criteria.

Medicare criteria requires that the chronic illness, without treatment, would normally have a life expectancy of six months or less. Specific criteria related to the chronic illness are also outlined by Medicare.

Because a hospice evaluation must be conducted by a health care professional, such as your primary care physician, they can help you understand the qualifications for your loved one’s circumstances.

Remember that your loved one or the person legally assigned to make care decisions for them have the right to choose whether to receive hospice care as opposed to continuing to receive treatment.

When your loved one is diagnosed with a life-limiting illness, a conversation may begin between them, your family members, and your doctor about the next best steps forward. Some people choose to continue treating their illness. However, others want to focus on comfort and quality of life in their own home.

If you need to reach out on behalf of your loved one, these symptoms are common among all hospice patients:

  • Frequent hospitalizations or ER visits within a short period.
  • Uncontrolled symptoms like severe pain, shortness of breath, or chronic nausea.
  • Progressive weight loss with decreased appetite or difficulty swallowing.
  • Loss of independence with bathing, dressing, eating, or using the bathroom.
  • Decreased alertness or increased confusion.

Insurance & Paying for Care

Live-in caregiver services and other 24/7 care depend on your state and zip code. The Federal Long-Term Care Insurance Program’s website allows you to view estimates for your specific location. Caregiver services with 24/7 care, such as private duty care, are paid out of pocket through long-term care insurance or authorized Veterans Affairs benefits.

Medicare and Medicaid cover the cost of hospice care for patients who qualify. Most private insurance plans include some hospice benefits, although coverage can vary. It is important to work with a knowledgeable hospice team that can interpret your benefits and coverage, so you get clarity and understanding during this time.

For most families, hospice costs little to nothing out of pocket. The Medicare Hospice Benefit covers nearly everything your loved one needs to experience hospice care, the way it was intended, including nursing, medical equipment and medications, social work, chaplain services, bereavement support, and more. Although you may have a copay for certain prescriptions or, if your loved one needs inpatient care, up to 5% of the Medicare-approved amount. However, you should expect very few expenses. Medicaid and most private insurance plans also offer similar coverage. Without insurance, most estimates online state the cost of hospice is around $150–200 per day.

Medicare Part A covers hospice care for beneficiaries with a terminal illness and a prognosis of six months or less, who have chosen comfort and pain management at home over a curative treatment.

Covered services include:

  • Nurse and doctor visits from an interdisciplinary care team.
  • Medical equipment and supplies.
  • Medications for pain and symptom management.
  • Respite care, allowing family caregivers a break.
  • Visits from a chaplain for spiritual support.
  • Counseling and bereavement services for the patient and their family.

HCBS & State Programs

Home and Community-Based Services (HCBS) providers help people receive long-term support in their home, as opposed to a clinical setting. These services are designed for people who need help with daily living, often because of ongoing medical or functional needs.

Depending on the specific state program, HCBS providers may help with bathing, dressing, meals, housekeeping, medication support, respite care, transportation, and more. The main goal of HCBS is to help people stay as independent, safe, and connected to their community as possible. Ask a provider in your state to better understand specific services and eligibility.

Choose a Home and Community-Based Services (HCBS) provider by ensuring they offer the specific support you need at home, such as personal care, light housekeeping and laundry, respite care for a family caregiver, or assistance with transferring. Ask about the team’s licensing, accreditation, approach to communication, caregiver screening and training, what to expect during visits, and the values your caregivers are committed to. You should also confirm that your provider accepts your insurance coverage or waiver program, so you know what to expect.

The biggest benefit of Home and Community-Based Services is the opportunity to receive care at home, as opposed to receiving care in a facility setting. This allows patients to maintain their independence, live with dignity, and stay safe, while remaining in a comforting environment.

Home and Community-Based Services (HCBS) waivers allow states to use Medicaid flexibly so that certain groups, such as those with specialized needs, get specific services at home.

Examples of HCBS waivers:

  • Kansas has a Technology Assisted (TA) waiver to help children and young adults who are dependent on critical equipment that compensates for a loss of an organ or bodily function, such as a ventilator.
  • Kansas also has an Agency-Directed Services waiver that allows patients to receive HCBS personal care, respite care, and other common HCBS caregiving services.

Home and Community-Based Services (HCBS) provide support in home and community settings to ensure a patient’s daily ongoing needs are met. Available through Medicare and Medicaid insurance, HCBS includes activities associated with daily life, like personal care; assistance that allows for independent living, such as help with meal prep, errands, and household work; health management; and more.

Medicare home health includes help from skilled nurses, medical social workers, and interdisciplinary healthcare professionals, like physical therapists. HCBS does not provide these healthcare services.

Private duty care offers similar care services to HCBS, yet it is paid for out of pocket, with long-term care insurance, or eligible Veterans Affairs benefits.

Institutional care is delivered in nursing facilities or other facility-based settings that may cover many of the same services as HCBS.

To find local resources for autism respite care, start with national locator tools, like the Access to Respite Care and Help (ARCH) Network, the Autism Society National Helpline, or the Autism Speaks respite tool.

You can also search for home care providers in your area that have Home and Community-Based Services (HCBS) and HCBS waiver programs that provide respite care through Medicaid and Medicare, including:

  • Missouri: In-home care through the Missouri Division of Developmental Disabilities / Department of Mental Health.
  • Kansas: Home and Community-Based Services Autism Waiver (ages 0–5) or Intellectual/Developmental Disability Waiver (ages 5+).
  • Illinois: Waiver for Children and Young Adults with Developmental Disabilities (ages 3–21) or the Waiver for Adults with Developmental Disabilities (18+).

Check with your chosen home care provider to learn about eligibility and whether respite care is available in your region.

In-home care helps adults with special needs by allowing them to receive care in the comfort and familiarity of home. In-home care empowers adults with special needs to live independently and with dignity, while receiving the help they deserve. Depending on the program, services may include personal care, respite care for family caregivers, and even social and emotional support to help those in need to live full, meaningful, and connected lives.

Respite care is temporary relief from your role as a family caregiver. Access to Care and Respite Help (ARCH), also known as the National Respite Network and Resource Center, has published an extremely helpful resource, The Practical Guide to Respite for Your Family, to understand your options.

Options listed in this resource include:

  • A home caregiver paid for privately or through your state’s Medicaid waiver program for children with disabilities.
  • A community-based setting.
  • Afterschool programs.
  • Hospital-based respite.

Each of these options has its upsides. For example, an in-home caregiver serves your child where they’re most comfortable, routines are already in place, and the family can be present, too.

Home care is available for many people with disabilities. Home care can help individuals receive care in a familiar setting that is personalized and customized to their needs; it also helps them to stay safe during their routines and encourages socialization and companionship.

Home care usually includes services like personal care (help with bathing, dressing, meals, and chores), respite care for family caregivers, care coordination, and employment support.

Medicaid is a primary source for long-term care. Programs such as In-Home Medicaid and Department of Mental Health help people with intellectual or developmental disabilities, physical disabilities, mental illness, and other conditions.

A home health aide is available for children with autism, although aides and the services they provide are called by different names.

In Missouri, a waiver called Children with Developmental Disabilities (MOCDD/Sarah Lopez) Waiver covers personal assistant services and in-home respite for family caregivers. Children under 18 are eligible.

In Kansas, programs depend on the child’s age. Children five and older may be eligible for the Intellectual/Developmental Disability Waiver, which includes personal care services, overnight respite care, and residential support for children.

In Illinois, two waivers exist for personal support services: the Waiver for Children and Young Adults with Developmental Disabilities (3–21) and the Waiver for Adults with Developmental Disabilities (18+).

Children in foster care who have disabilities may qualify for various resources to help them feel as healthy and supported as possible.

  • Healthcare: Medicaid, Early and Periodic Screening, Diagnostic, and Treatment (EPSDT), In-Home Medicaid, and Home and Community-Based Services waivers, like the Technology Assisted Waiver in Kansas, are strong resources. Easterseals offers therapeutic and specialized care for foster children with disabilities.
  • Education: Caseworkers help families find foster placements and school supports.
  • Advocacy: Family Voices, Parent Training and Information Centers, disability rights nonprofits, and foster/adoptive parent groups also help families find services, training, respite, and support.

Certain programs make care more affordable for children in foster care with disabilities.

  • All foster children in Missouri are eligible for Medicaid health care, a Protective Services subsidy for child care, and Treatment Foster Care therapies.
  • Missouri offers Healthy Children and Youth Private Duty Nursing, which is also available through a waiver in Kansas and Illinois.
  • Children in foster care who have special needs in Kansas receive care through Medicaid services and waivers. Child care assistance is also available through the Kansas Benefits Card or by becoming a payee for a child’s benefits.
  • The Department of Children and Family Services in Illinois provides a monthly stipend for children’s basic care needs, along with a statewide Medicaid plan called YouthCare.
Home and Community-Based Services (HCBS) offer care services at home for eligible adults, including those with physical and intellectual disabilities. The purpose of these services is to allow people to live independently in their own homes, rather than in nursing homes or institutions. HCBS can include nursing, personal care, therapy, transportation, and even respite for caregivers. HCBS is funded by state Medicaid waivers for specific services, such as the Technology Assisted Waiver for children who are dependent on medical technology and skilled nursing. Your Medicaid office can provide information on eligibility and can help you arrange an assessment to see if your loved one qualifies.

Caregiver costs vary based on your loved one’s needs. There are also certain care needs that are covered by Medicaid Home and Community-Based Services (HCBS), such as personal care. Other services, including skilled nursing, may be available through an HCBS Medicaid Waiver, but it is important to check with your state’s Medicaid program to determine what your loved one qualifies for.

In states like Missouri and Kansas, a family member can be paid to provide care for a loved one with special needs, but it cannot be the spouse, legal guardian, or person who is legally representing them. Waivers in Kansas and Missouri, along with Missouri’s Consumer-Directed Services, can allow a family member to receive payment for care.

Respite care for family members who have a loved one with autism includes hospital-based respite, paid home caregiving, and community-based settings.

These options provide relief for family caregivers to recharge, address other responsibilities, and return to caregiving with more energy and balance. However, each one offers a different core benefit. Although hospital-based and community settings give the family respite outside the home, a family may prefer keeping their child or young adult in a familiar setting, where everyone can remain close.

To better understand the options available to you, visit the National Respite Network and Resource Center and download their resource, “The Practical Guide to Respite for Your Family.”

In-home care is often the safest option for autistic adults with behavior or sensory needs. Receiving care at home allows your loved one to be in a place that is more comfortable, familiar, and predictable, which reduces anxieties and triggers that may escalate in other environments. Professional in-home caregivers who have experience with autistic adults understand how to give care in a way that meets their client’s special needs. They also receive training in behavior support, de-escalation, and more. Look for an agency that is deeply engaged in wanting to ensure they deliver care that is best for your loved one. That focus speaks volumes about the level of safety, dignity, and compassion your loved one will experience. Respite care for family members who have a loved one with autism includes hospital-based respite, paid home caregiving, and community-based settings. These options provide relief for family caregivers to recharge, address other responsibilities, and return to caregiving with more energy and balance. However, each one offers a different core benefit. Although hospital-based and community settings give the family respite outside the home, a family may prefer keeping their child or young adult in a familiar setting, where everyone can remain close. To better understand the options available to you, visit the National Respite Network and Resource Center and download their resource, “The Practical Guide to Respite for Your Family.”

Healthy Children and Youth Private Duty Nursing and Personal Care

Yes. Private duty nursing may be covered by Medicaid or private insurance when it is medically necessary. For children and young adults in Missouri, care may be available through Missouri Medicaid’s Healthy Children and Youth program, which supports eligible individuals with special health care needs from birth through age 20.

Coverage is not automatic. Services usually require medical documentation, a physician’s order, a care plan, and prior authorization before care can start. Private insurance may also cover private duty nursing, depending on the plan and the child’s needs. Families should talk with a reputable provider who understands Medicaid and insurance requirements to help determine eligibility.

Yes. Private duty nursing may be covered by Medicaid or private insurance when it is medically necessary. For children and young adults in Missouri, care may be available through Missouri Medicaid’s Healthy Children and Youth program, which supports eligible individuals with special health care needs from birth through age 20.

Coverage is not automatic. Services usually require medical documentation, a physician’s order, a care plan, and prior authorization before care can start. Private insurance may also cover private duty nursing, depending on the plan and the child’s needs. Families should talk with a reputable provider who understands Medicaid and insurance requirements to help determine eligibility.

Private Duty Care

Private duty home care provides personalized, one-on-one care in your loved one’s home. This non-medical help includes help with daily living, such as bathing, dressing, meals, companionship, transportation, pet care, medication reminders, and more. This service is typically paid for out-of-pocket, through long-term care insurance, or authorized VA benefits. To ensure you’re connected with a reputable caregiver, look for a caregiving agency that conducts thorough background checks, provides ongoing training, carries insurance, and matches you with a caregiver who can best meet your needs. Ask the agency about their values, how they screen candidates, and what happens when concerns arise. When you choose a top agency, you’re more likely to get the quality care you deserve.

Caregiver Support & Resources

Caregivers can access free and low-cost resources that can reduce stress and prevent burnout.

  • Government and community: Eldercare Locator connects users to local services and Area Agencies on Aging (AAA) provide counseling and case management.
  • Respite and mental health: The ARCH National Respite Network helps find temporary relief and the Caregiver Action Network offers a free help desk.
  • Legal and practical: The AARP Caregiving Center and the National Institute on Aging offer checklists, toolkits, and Medicare guidance.

If you’re looking for relief from caregiver duties, you might also consider private duty care. A private duty caregiver can give you a break from your responsibilities while covering your loved one’s needs.

Respite relief services offer temporary breaks for family caregivers by providing short-term care for a loved one with disabilities or chronic illnesses. Care is available in-home, at adult day centers, or in facilities for hours, days, or weeks.

What’s offered:

  • In-home care provides companionship, personal care, and household help. Private duty care is a form of in-home care paid for out of pocket, with eligible VA benefits, and some long-term care insurance plans.
  • Adult day services provide supervised social and recreational programs.
  • Facility-based care offers a temporary stay in a nursing home or assisted living.

To find respite relief services, contact a home care provider in your region, such as Phoenix Home Care & Hospice, which serves Kansas and Missouri.

Comprehensive Disease Management

Disease management services are coordinated, evidence-based programs designed to support patients with chronic conditions like diabetes, heart failure, or asthma. They focus on patient education, medication adherence, and care coordination to prevent complications and improve quality of life.

Core features include:

  • Care coordination: Nurses, doctors, and other specialists work together to create a personalized care plan.
  • Education and self-management: Your team provides tools to track symptoms, teach you about how to care for yourself, and how to modify lifestyle behaviors.
  • Monitoring and follow-up: Your team may also provide reminders for preventive screenings, medication refills, and routine check-ups.
  • Important paperwork: Excellent programs may also offer help filling out paperwork for Advanced Care Directives and Durable Power of Attorney.

Consumer Directed Services

To find Consumer Directed Choices (also known as Consumer Directed Services) in your area, start by contacting your local Department of Social Services or Medicaid office, as these programs are primarily funded through state Medicaid waivers.

These tips might help you find the right agency to help you get started:

  • Search your state or city plus the term “Consumer Directed Services,” “Self-Direction,” or “Participant-Directed Care.”
  • Find a provider, such as Phoenix Home Care & Hospice in Missouri or Kansas, that helps navigate these programs.

Consumer directed choices — also commonly called Consumer Directed Services — allow seniors to manage their own long-term care by giving them control over their budget and caregiver selection.

Key benefits include:

  • Choice and autonomy over your caregiver.
  • A care plan customized to you.
  • The ability to age in place at home.
  • Financial flexibility, due to budget control.

Providers like Phoenix Home Care & Hospice support families exploring consumer directed care.

Consumer Directed Choices, also called Self-Directed or Consumer Directed Services shift control of caregiving from a provider to the individual receiving care. The care recipient becomes the employer of their own caregiver.

In this role, you can recruit and hire your own personal care attendants, home health aides, or nurses. You set their schedule and train them on your routine. Consumer Directed Services often support you by handling background checks, payroll, tax filings, and other administrative tasks.